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  1. by Chelsea Goldstein, Dysautonomia Information Network Learning of your new diagnosis can be overwhelming under any circumstances. Learning of your new diagnosis that no one has heard of, let alone understands, can trigger complex feelings and reactions. If you are reading this article, you have likely been diagnosed with dysautonomia recently or many years ago, or know someone who has. Prior to your diagnosis, you may have spent years searching for explanations for your symptoms. And during that search, you could have been told those symptoms are "all in your head" or "you're too young to be that sick"... the list goes on. FINALLY getting a diagnosis could have surfaced a wide array of emotions, among them relief and validation to finally have a name for your experiences--no, it was not all in your head. Then, as you went home armed with your diagnosis, and continued living with the symptoms of your life-altering dysautonomia, your relief and validation were likely accompanied by feelings of loss, anger, joy, empowerment, etc. Whatever you felt and still feel is okay, and while everyone's reactions are different, this article is meant to address some of the major aspects of adjusting to life with dysautonomia. Let Yourself Feel There is no right way to feel about your diagnosis, just like there is no right way to adjust to the change of living with a life-altering condition. Try to practice accepting your emotions, whatever they may be. I have always seen myself as a go-getter. If there was an obstacle in the way of achieving my goals I found ways to bulldoze over it. My sense of identity was very much defined by my ability to achieve - achieve my goals, achieve career progress, achieve success. Then, my story took a turn that is probably familiar to many of you - I developed mysterious and debilitating symptoms after an infection. I had to put all of my dreams on hold, and I spent years in and out of various medical establishments to try to figure out what the heck was going on with me. I was told I was crazy, dramatic, had a low pain tolerance, and I was just fearful of growing up until one doctor listened and diagnosed me with a condition that I had never heard of, dysautonomia. Armed with a diagnosis, I decided I would attack this new condition head on and be back to my old self - finally. The story didn't go that way, and that triggered feelings of sadness and hopelessness. Then, I got angry at myself for getting down. In my mind, feeling sad and sorry for myself meant that all those doctors who said I was dramatic or crazy were right. Looking back, I realize I was far too hard on myself. And, honestly, some days I still am. But now I try to keep an awareness that these feelings are expected. In fact, it would be a bit alarming if I didn't feel them sometimes. After some research, I felt validated to know that it is normal to feel a TON of emotions after a new diagnosis - even ones that seem to contradict each other, such as feeling a sense of acceptance one day and anger the next. You may also go through periods of grief, sadness, bargaining, and denial (1). It may also be helpful to realize how the stigma of conditions can impact our reactions to them. For example, people diagnosed with diabetes report feeling guilt and shame (1), while people with dysautonomia may question the legitimacy of their condition even after a diagnosis. It is also important to remember that it is okay to seek mental health support. Our articles, You're Not Alone: Understanding Depression and Chronic Illness, and I Can't "Just Relax": Understanding Anxiety and Chronic Illness, may provide some insight. While dysautonomia is not caused by anxiety or depression, both of these conditions can develop as a result of dealing with the condition. One woman reported that she started having anxiety around having a fainting episode in public. This would prevent her from engaging in loved activities, and it created some confusion regarding what symptoms were caused by POTS and what symptoms were exacerbated by anxiety. Talking with a therapist helped her regain a sense of control (2). Understanding Acceptance Acceptance can be a fueled word, and we all interpret it a little differently. One important point is that accepting your diagnosis does not mean that you are giving up on any other aspect of your life. While it may take time to accept your new diagnosis, many experts agree that denial does not usually have long-term success (1). You will likely go through periods of denial as you adjust to living with a chronic illness. That is okay. However, living in denial for a long period of time can lead to worse psychological well-being than facing your illness (1). While acceptance can operate differently in each person's life, here are a few ways you can practice cultivating it: One person with POTS said that acceptance meant acknowledging her body could no longer do the things it did before. She worked on this by taking each day as it came, and allowing herself the time she needed to mentally adjust to how her body functioned on a day-to-day basis (2). While this may seem like giving up, she actually took on the very conscious and active task of recognizing her body for what it was, and changing the way she thought about it. Another activity could be finding ways to challenge yourself appropriately, given your new normal. Walking down the driveway to collect the mail may be something the old you took for granted. It may, however, be a very appropriate challenge for your current body (2). Challenging yourself in seemingly small ways (and giving yourself credit for facing these challenges!) can add up to feeling accomplished and empowered within your current reality. Really, really try not to compare yourself to others, even others with dysautonomia (3). Dysautonomia presents so differently in each person, and every person has their own, unique set of circumstances that challenge them. If you are in a mindset of comparing yourself to others, you will always find someone who seems to be doing better than you. In my early years of living with dysautonomia, I always felt like I was falling behind in career and life goals when I compared myself to peers my age. I was also battling a life-altering illness, but I never gave myself credit for that. Please don't make the mistake that I made. Claim your worst-case scenario. It is natural to start to think about all the things that could go wrong with your health and circumstances when a lot of things have gone wrong. Next time you begin to imagine the worst-case scenario, start to think about all the things that will still be okay even if that scenario happens (3). Above all else, be kind to yourself. Think about a person you care about deeply. Would you be as hard on them as you are on yourself if they had a severe health condition (3)? Being kind to yourself is ending each day with the reminder that you did the best you could that day with what you had. Even if you rested all day you gave your body the time and permission it needed to care for itself. We will all experience moments of anger, denial, sadness, and anxiety, so be kind to yourself when these emotions arise. Your self-compassion will help you shift out of these moments more quickly and refocus on all of your wins, no matter how small. Learn New Ways of Being Dysautonomia may have dramatically altered your life, and you might need to think about how you can adjust your everyday activities to fit your new normal. 1. Learn: While it can be easy to get lost in the Googlesphere, a healthy pursuit of knowledge about your condition can be beneficial to advocate for yourself in medical appointments because your research will encourage you to ask more pointed questions. It will also help you recognize your specific symptom triggers (2). We recommend keeping a running list of questions, perhaps on your phone, so that they are ready to ask them when you meet with your doctors (1). Just be sure to always seek understanding from reputable and trusted sources. 2. Track: While learning about your condition from outside sources is helpful, it is also critical to understand how it manifests in you. It can be tough to remember all your symptoms, especially if brain fog is one of them, so a symptom diary can be a good way to track your day-to-day illness experiences (3). This was one of the most valuable activities I did when I was first diagnosed. It helped me realize that my symptoms dramatically exacerbated when I got poor sleep, and I could demonstrate clear trends to my doctors. 3. Manage: You will not be able to control your health entirely. If you could, you would probably know exactly what to do to cure yourself of dysautonomia. Nonetheless, you may discover there are small management techniques that work for you (sort-of, sometimes) to keep your symptoms as minimal as possible. These management techniques could be identifying the type of nutrition that makes your body feel its best, taking your medications as prescribed, or focusing your time and energy on people who support you and your health (1). It's also important to recognize that individual management techniques for dysautonomia don't always have dramatic impact. Increasing the salt and fluids in your diet may help a little, just like changing your sleeping position or wearing compression socks. Altogether, though, they may take the edge off your symptoms so that you can get you through the day. Always remember to count the small wins (3). 4. Modify: I would love to say that with determination you can do all the things you could do before you were sick. However, that over-simplified message can push people into spaces of denial, and even cause them to harm their bodies. What I will say is that what you can or can't do is individual to you, and I do believe there are ways to modify most activities so that you can still get some type of joy from them without putting your health at unreasonable risk. One person with POTS reported she had a goal to finish college. She achieved that by enrolling as a part-time student, taking advantage of the university's resources, and enlisting friends and family to help her get to class (2). There may be some barriers when you go about achieving your goals, or finding your joy, in non-traditional ways. When your energy is limited you must get clear with yourself about your priorities and focus your energy and resources there. This focus will probably unlock some creative problem solving in you. 5. Self-advocate: Teaching other people about your conditions can be exhausting. Advocating for yourself, especially in medical settings, can be exhausting. Self-advocacy is certainly an unnecessary stressor when you are already working overtime just to live your day-to-day life. However, a lot of people with dysautonomia do report they feel like they have more control over their circumstances when they speak up. This may include communicating with a boss, coworker, or professor about your needs, making sure your doctor is not dismissing your symptoms, or choosing to educate a friend when they haphazardly make a hurtful comment. 6. Have Compassion: FOR YOURSELF! It is so easy to be tough on ourselves, especially when we get messages from the outside world that we should be doing more, we're being dramatic, or we really should be better by now. This unfair messaging can trigger us to do all the things all at once to improve our health. However, that can cause unnecessary stress and can even make our health worse if we take on too much at once. Also, it is difficult to know what is actually having a beneficial effect when we make a lot of changes at once. Remember that what works for one person doesn't work for every person, so a sustainable strategy is to make small changes over time and assess how effective they are (3). That way you are only keeping the ones that truly work for you in your life. 7. Ask for Help: Asking for help can be a hard task for anyone. If you feel like a burden because of your illness, you may be even less likely to ask for the help you need. Very often, loved ones don't know how they should help, so asking for direct support with specific things can actually make them feel in control and useful in a difficult situation. Open communication is invaluable in maintaining healthy relationships with your loved ones, in professional settings, and with medical providers (3). Tips for Friends and Family You have likely endured the diagnostic roller coaster with your loved one, experiencing repeated moments of hope and disappointment as you sought answers to their life changing symptoms. Now that your loved one has a diagnosis, what can you do to help? DO listen. DINET conducted a survey a few years ago to learn about experiences of living with dysautonomia. Results demonstrated that the most helpful thing friends and family can do is listen (4). When we talk, recognize that we are choosing to share our most vulnerable selves with you, even though it's exhausting, and even though so many people (including doctors) have rejected our experiences. Ask questions. Get clarification. And, please, listen openly. DO believe your loved one. In the same DINET survey, the second most helpful thing friends and family can do is believe us. Dysautonomia can be invisible and symptoms change rapidly. We may be bedridden in the morning, but ready to socialize by the evening. Please never assume the way we look or these rapid changes in our health mean we are faking it. Instead, support us when we feel sick and rejoice with us when we do get to engage in our favorite activities (2,4). DO gently encourage your loved one to find support. Professional support and a community of people who live with the same conditions can be essential to helping us process and validate our own experiences. Just make sure you gently encourage your loved one to find resources because some people need to process things alone before they are ready to share (4). DO follow your loved one's lead. Some people may want help finding ways to modify a favorite activity. Others may feel loss when they try a different version of a beloved activity. Never push what you think is best (4). DO NOT tell your loved one how they should feel. What your loved one feels is probably very fluid - they could experience a whole range of emotions as they adjust to their diagnosis. Comments that invalidated their "negative" emotions are harmful. In the DINET survey, participants reported that the most hurtful remarks loved one's made were: 1) You don't look sick, 2) Think positive, 3) You should feel grateful that things aren't worse (4). DO NOT impose your own timeline on your loved one's adjustment. Everyone processes change, grief, and emotions in their own way on their own timeline. When your loved one seems stuck in their grief and anger, it's natural to want to encourage them to cheer up. Please be careful on how you go about this - dismissing their feelings or pushing them into "cheerful" situations could invalidate their feelings and complicate their adjustment process (4). DO NOT take your own frustration with the situation out on your loved one. Living with dysautonomia is a stressful experience for everyone impacted by the condition, including you. You will certainly get frustrated with the situation, just like your loved one who has the condition. Remember that you are allowed to feel frustration, anger, and grief, too. Just please do not lash out on your loved one who may already feel like a burden. Instead, approach them with openness and vulnerability or try to find your own sources of support, such as a trusted friend, professional help, or a support group specifically for friends and family (4). Resources Article Citations Coping with a Diagnosis of Chronic Illness. (2013, August). American Psychological Association. https://www.apa.org/topics/chronic-illness Arotin, S. (2019, November 28). Through My Eyes: Living with an Invisible Illness. Medical News Today. https://www.medicalnewstoday.com/articles/327155 Dysautonomia Support Network. (2019, July 3). 20 Messages for Anyone Newly Diagnosed with Dysautonomia. The Mighty. https://themighty.com/2019/07/dysautonomia-just-diagnosed-advice/ MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/ Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:f2502f85-4050-46e6-8bd9-b29463a05154
  2. By: Chelsea Goldstein, Dysautonomia Information Network Perhaps, you've worked with your boss to make accommodations for your health at your job. You've been open with coworkers about your dysautonomia, and you've developed a handbook of pretty clever tricks to get through your workdays. Maybe you've even changed jobs in an effort to find a career that doesn't make you sick. Even still, you've used up all of your PTO, you can barely function when you get home from work, and weekends are consumed by trying to "heal" as much as possible so you can do it all over again next week. If this sounds like you, you may be at the point of considering disability support and benefits. Pursuing disability benefits can be an overwhelming and emotional process. This article is meant to be a guide to help you make a decision that is right for you, and provide you with a place to start understanding the process of applying for disability. The Decision to Leave Your Job is an Emotional One And that’s okay. 1. Talk It Out. As you labor over the decision to leave your job due to your health, it may be helpful to get input from friends, family, and your doctor. They can provide perspective on whether leaving your job permanently is a wise decision, or if a temporary reprieve may be more appropriate. A trusted doctor may be an especially important person to talk to because their support will be helpful during the disability application process. Just make sure that the people you talk to are supportive of you and aware of your condition. You do not need someone making you feel bad for not being able to get through a typical workday. Also consider seeking support outside your immediate network. Some therapists are trained to work with people with chronic illness, and the DINET forum is a great place to connect with others who have dysautonomia (1). 2. Accept Your Emotions During This Process. Choosing to leave your job can bring up a myriad of emotions including grief, loss, anger, fear, and feelings of failure. Accept that you will feel many of these things, and that is okay. Remind yourself that these emotions will pass. Many people feel an overwhelming sense of relief once they leave their jobs and focus on their health (1). 3. Be Intentionally Engaged. Make sure you have a plan to feel a sense of support and community once you leave your job. This could mean being more intentional about connecting with friends, even virtually, or finding new communities, such as support groups. Finances may become tight when you leave your job, so seek out ways to stay engaged for free or cheap, such as pursuing hobbies at home (as you are able), making reading goals, and spending time outside (1). 4. Maintain Purpose. You may feel a blow to your self-esteem as you leave your job. Try to prepare for this by making sure you still feel purpose. You could write a blog to process your feelings and help others, you could become active in a support group, or mentor someone who is newly diagnosed with your condition. Today, there are many ways to volunteer that can be done from home. If you aren't sure how to give back, a good exercise is to think how you would spend your last day on earth. Use your answer to figure out where to best invest your precious energy (1). 5. Be Prepared. Knowledge really is power. The decision to leave your job and pursue disability will be made easier if you feel prepared to make the transition. You should get an idea of what options you may have for disability pay before your paychecks stop coming in. The rest of this article is a good place to start (1). Social Security Disability Insurance & Supplemental Security Income Social Security Disability Insurance (SSDI) and Supplemental Security Insurance (SSI) provide financial support for individuals living with disabilities. Eligibility for both programs is determined by your financial and medical situations. The major difference is that SSDI is available to people who have accumulated enough "work credits" to qualify, while SSI is for individuals who have limited income and who have minimal, or no, work history (2). Medical Eligibility: The medical eligibility criteria is the same for SSDI and SSI. Individuals must be considered "permanently" disabled to qualify for both programs. This is defined by an individual's disability having lasted (or is expected to last) for at least one year. SSDI and SSI do not provide temporary disability benefits (3). Your condition(s) must be considered severe and prevent you from working at any of your past jobs, as well as prevents you from working in a less physically or mentally strenuous job that you qualify for (4). Some conditions qualify for SSDI and SSI by meeting the strict requirements in the Listing of Impairments. Dysautonomia is NOT in the listing. You can still qualify if your condition(s) are not in the listing. You need to supply evidence that your condition causes severe functional limitations that limit your ability to do activities such as lifting, standing, walking, sitting, and remembering (4). A lawyer may be a good resource to help you navigate the disability application process especially if your condition(s) are not in the listing. Disability lawyers in each US state can be found here. Financial Eligibility The financial eligibility criteria is different for SSDI and SSI. Your income must be limited. If you earn $1,260 per month or more in 2020, you are considered to have "substantial gainful activity" and are not eligible for either program (3). SSDI requires you have enough "work credits". The amount of required work credits varies with age. Work credits are calculated by how long you have paid income taxes, and how long ago you last worked (3). You can calculate your eligibility here. SSI is available for people with limited assets and too few work credits. SSI does have strict income restrictions and you cannot have more than $2,000 in assets (with some exceptions). The general federal rate is $783/month, but the amount you get may vary based on your home state and your total household income (5). You can calculate your SSI eligibility here. Other Things to Consider If possible, take time to learn about your options. Medical Coverage. SSDI and SSI are not medical coverage. If you currently have medical coverage through a job, research how long it will last, and at what cost, if you leave your position. You will be eligible for Medicare if you receive SSDI, but only after a 24-month waiting period. You may also qualify for Medicaid, in the meantime, if you meet specific income restrictions. These vary by state (1). Application Process. Be prepared for a lengthy application process. Many people get denied on their initial application, so it may be good to plan for this. You may have to file an appeal, and denied applicants have a better chance at a hearing (1). Again, you may want to consider talking to a lawyer as you begin your disability application process. Here are several resources, worksheets, and checklists to help you prepare for a disability interview. Adults over 18 who are not receiving Social Security benefits, have not been denied SSDI in the last 60 days, and who cannot work due to a medical condition can apply online. Additional Support. You should consider other avenues of financial and medical support if you live with a disabling condition. These avenues of support could hold you over during the SSDI application process. State Disability Insurance. Some states offer temporary disability benefits that will cover a percentage of your salary (6). Company Disability Insurance. Some companies offer temporary disability that typically cover a percentage of your salary for six months (1). Pension/401K. Some pensions/401K plans can be accessed early without penalty due to disability. Check the rules of your pension or 401K, if you have one. Other Federal Programs. There are other federal programs to help individuals with housing, taxes, medical bills, and to help veterans. This page is a good place to start. Support for Children. Your children may also be eligible for benefits if you receive disability support (7). Other Countries (not USA). Some countries have Disability Living Allowances, and may even have support for caregivers (1). Resources Figuring out what disability options may work for you can be a daunting process. But, the more you know, the more you will be prepared for the transition. If possible, take some time to review your options. These resources may be good places to dig deeper. Article Citations Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/ Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3 Additional Resources Apply for Social Security Online. https://www.ssa.gov/disabilityssi/ Disability Secrets. http://www.disabilitysecrets.com/ Life After Work, When Chronic Illness Makes You Quit a Job You Really Love. https://creakyjoints.org/blog/lifeafter-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/ National Organization on Disability. http://www.nod.org Online Lawyer Source. http://www.onlinelawyersource.com/social-security-disability/index.html Social Security Administration's Adult Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/AdultListings.htm Social Security Administration's Child Listing of Impairments. https://www.ssa.gov/disability/professionals/bluebook/ChildhoodListings.htm Social Security Administration, Disability. https://www.ssa.gov/benefits/disability/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:e0c9de08-4e39-44b2-a3fe-ccc575ade710
  3. by Chelsea Goldstein, Dysautonomia Information Network Mental health conditions, like depression, are often difficult to talk about because of their stigma. If you live with dysautonomia and depression you may be even more hesitant to talk about your mental health needs out of fear that your dysautonomia will be dismissed as "all in your head." Unfortunately, this can lead to improper treatment of dysautonomia, depression, or both. However, we rarely discuss how it is normal to live with BOTH depression and dysautonomia. In fact, research demonstrates that about 25 to 33% of people living with chronic illness also have depression, and understandably so (1). Dysautonomia is a life-altering condition that can bring about sudden changes in careers, relationships, physical ability, and identity. Feelings of despair, grief, and sadness are typical for anyone experiencing such dramatic change and loss (2). This article provides a brief overview of the types and symptoms of depression, and how depression may present with dysautonomia so that you can work with your medical providers to get appropriate treatment for your physical and mental health. Types and Symptoms of Depression These are general descriptions of depression, and each person's unique experience may not fit within these exact categories. If you suspect you may have depression, you should seek diagnosis and support from a qualified medical professional. Clinical Depression Clinical depression refers to a group of conditions that are long lasting and not necessarily triggered by a specific event or stressor. They can interfere with a person's ability to engage in everyday activities, including work, school, self-care, and family. People with clinical depression will generally experience five or more of these symptoms (1): Difficulty sleeping/sleep change Inability to enjoy activities Agitation or extreme lethargy Feeling worthless/self-hatred Extreme guilt Suicidal thoughts Extreme weight loss or gain Increased irritability in children There are several types of clinical depression. Common types are (3): Major depression - a low mood is regular and all-consuming Persistent depressive order - a low mood for at least two years that may not be as severe as major depression Bipolar disorder - episodes of depression AND high energy Seasonal affective disorder - depression due to shorter days Perinatal/postpartum depression - occurs during pregnancy and/or in the first 12 months after birth Situational Depression Situational depression can occur after a major life event, such as a divorce, job loss, death, or significant change in health. Some sources report that symptoms usually surface within the first 90 days after the trigger (4), and subside within six months (5). The symptoms of situational depression can be very similar to symptoms of clinical depression with the differentiating factor being a specific triggering event (1). It is normal to experience depressive symptoms after such profound loss (1), and you may experience them throughout your adjustment to your new life situation (4). It is also important to note that situational depression is different than post-traumatic stress disorder (PTSD), which usually lasts longer than situational depression and is characterized by anxiety, flashbacks, and reliving traumatic experiences. However, depression and PTSD can co-occur (5,6). Depression and Chronic Illness As mentioned above, it is normal for people with physical chronic illnesses to experience depression. It can be difficult, however, to understand the relationship between your physical and mental health when you are dealing with multiple conditions. Most people with chronic illness will experience some type of mourning as they adjust to their circumstances of living with their condition(s). Feelings of grief, loss, mourning, and sadness may or may not be related to clinical or situational depression (1). Regardless of the cause, it is important to remind yourself that there is no shame in experiencing a full range of emotions no matter your life circumstances. While only a qualified medical professional can diagnose depression, it is important that you are aware of its symptoms so that you can seek appropriate professional support if needed. This is particularly important for people living with dysautonomia and related chronic conditions because common symptoms of these physical conditions, such as fatigue, appetite changes, brain fog, and insomnia, can also be symptoms of depression. Unfortunately, people with chronic condition(s) and their loved ones frequently dismiss these symptoms as "normal" parts of living with chronic illness when they may be related, in part, to depression (2). A strong understanding of your underlying physical and mental health is critical to getting appropriate support. Individuals living with dysautonomia should also be aware of medication-induced depression, or depression that results as a side effect of specific medications. A thorough review of your medical history, an inpatient exam, and even lab work to confirm the amount of the suspect medication in your bloodstream are the best ways to determine if you are experiencing medication-induced depression. If you are starting a new medication, it may take your body about four weeks to acclimate. You may want to work with your medical professional to switch to a different medication if you are experiencing depressive symptoms after four weeks that onset with the new medication. While situational depression is common and expected among people adjusting to life with chronic illness, it is also normal for people to live with multiple chronic conditions, including clinical depression. If you find that your symptoms of depression are long-lasting, try to remember that you cannot force yourself to "just get over it" no more than you can will your body to magically cure your dysautonomia. Instead, recognize that these longer-lasting symptoms may be an indication that you are living with clinical depression, and you deserve access to support and management strategies to be as well as possible. Similarly, it is important to understand that you can experience more than one type of depression at a time (1). Living with chronic illness and depression in a society full of stigma is tough, to say the least. Dealing with dysautonomia can bring about depressive symptoms that, in turn, can impact the management of your dysautonomia (1). Try to be kind to yourself as you navigate these complexities. Management Options These are a few general management options. You should work with your medical professional to tailor a plan specific to your needs. Early diagnosis of depression among people with chronic illness has been shown to lead to overall improvements in health, better quality of life, and stronger adherence to medical management plans (2). These results demonstrate that it is best to seek professional support and treatment as soon as possible if you suspect you may be living with depression. Some management options include: Medication: Medication is not right for everyone, but can be an effective management tool for some people. It is not fully understood how antidepressants work, but they are believed to effect the brain chemicals involved in depression (2). It may take some time and a strong understanding of your overall health to find a medication regimen that works for you. Psychotherapy: Psychotherapy, also referred to as simply "therapy," is an umbrella term for a number of techniques used to treat depression, and other mental health concerns. Goals of psychotherapy may include understanding major life events (e.g., illness, family issues) that have contributed to your depression, identifying behaviors, emotions, or thought patterns that feed depression, and regaining a sense of control and joy in life (2). Support: While medication and/or psychotherapy may be appropriate options for managing your depression, it is also important to surround yourself with supportive environments where you feel you can discuss your mental health openly, either in-person or online. The DINET Forum is one space where you can virtually connect with other people living with dysautonomia, as well as provide support to fellow members. It can be surprising how much helping someone else can positively impact your own mental health. Combination management: It may take time and open communication with your medical professionals to find the management plan that works for you, and you may find that your ideal plan is a combination of medication, psychotherapy, support, and/or other lifestyle adjustments such as diet, meditation, and exercise. In fact, it is quite normal to manage depression with multiple techniques, just like dysautonomia. Just remember that it may take some time to figure out what works for you, and what works today may change over time. If you or a loved one are experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Resources Article Citations MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/   Chronic Illness and Depression. (2017, January 17). Cleveland Clinic. https://my.clevelandclinic.org/health/articles/9288-chronic-illness-and-depression Merz, B. (2018, June 9). Six Common Depression Types. Harvard Health Publishing. https://www.health.harvard.edu/mind-and-mood/six-common-depression-types Higuera, V. (2018, September 28). Situational Depression or Clinical Depression? Medical News Today. https://www.medicalnewstoday.com/articles/314698 Mental Health and Adjustment Disorder. (2018, October 18). WebMD. https://www.webmd.com/mental-health/mental-health-adjustment-disorder#3 Tull, M. (2020, March 27). The Relationship Between PTSD and Depression. Very Well Mind. https://www.verywellmind.com/ptsd-and-depression-2797533 Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness Creaky Joints. https://creakyjoints.org/support/depression/ NOTE: This article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:9e6036eb-16ba-41a1-9bf8-09af8c281b48
  4. By: Chelsea Goldstein, Dysautonomia Information Network Homeschool, distance learning, remote education, e-learning, and tele-education are but a few terms to describe the various structures of schooling that can be done from home (either full-time or part-time) with the assistance of technology. To minimize confusion, we will refer to all of these terms as distance learning for the rest of this article. If you or your child lives with dysautonomia, you may have been engaged in distance learning for some time. You may also have a story of your tireless battle with a school system to get distance learning accommodations. It is notoriously difficult to get these accommodations approved, especially when conditions are invisible, even though research demonstrates that students experience increased anxiety and poorer academic performance when they try to "catch-up" on classes they missed due to medical reasons (1). Insert 2020, and distance learning is more or less a norm. On one hand, it can be infuriating that distance learning is all of a sudden available to all students when it was a struggle to get it previously. On the other hand, it can be a relief that you or your child is finally getting access to an education style that works for your needs. Student Rights If you have struggled to get approval for distance learning for your child who has chronic illness, it is important to know that they have rights. Children have a right to free appropriate public education (FAPE) through the Individuals with Disabilities Education Act (IDEA; 2). IDEA was enacted to ensure appropriate special education, accommodations, and related services are available to students with disabilities in public schools (3). Given this law, why do so many students with dysautonomia struggle to get education accommodations, especially accommodations for completing some or all of their education from home? Private schools are not held to the same federal standards (4), so if your child attends an unaccommodating private school you may want to consider talking with your local public school district. The term "disability" is loosely defined and often misunderstood. Many people have a stereotypical, singular view of disability represented by a permanent/progressive condition, and full-time use of a mobility aid, such as a wheelchair. More often than not, people with dysautonomia don't fit in that category. We may or may not use a mobility aid, and if we do we don't always need it 24/7. Many of us "look healthy" on the outside, and the roller coaster nature of our symptoms can cause people to point to our good days and say "They're fine!" Educators should be aware of, and open to, recognizing the diversity among people with disabilities but, unfortunately, this is not always the case. When a decision-maker doesn't understand the complex nature of disability, students with dysautonomia may be labeled as "not disabled enough" for distance learning accommodations. IDEA states students have a right to appropriate accommodations, but the term "appropriate" is also poorly defined. When educators don't understand the nature of dysautonomia, they may decide that distance learning is not an appropriate accommodation for a student with the condition. Section 504 of the Rehabilitation Act also protects the rights of students with disabilities in public schools. Briefly, it states that no student should be denied the benefit of services that receive federal funds, including schools (3). If attending school in-person causes your child's dysautonomia to flare, then you could argue that they are being denied the full benefit of education. The Americans with Disabilities Act is also in effect to protect people with disabilities from discrimination (3). It could be considered discrimination if your child is denied accommodations that promote learning in a suitable environment. The ADA has a broad and encompassing definition of disability. Distance Learning Options There are several ways distance learning can happen to meet your child's needs. Here are some things to know: Communication is key. You should expect to be in frequent communication with your child's school system to arrange and enact distance learning accommodations. It is possible that your child's school has not worked with any, or very few, students with dysautonomia, so you will likely need to take an active role in developing an education plan that works for your student. In other words, "the squeaky wheel gets the grease." You may want to start by communicating with your child's doctors. How could your child's treatments affect school performance? Could a doctor help explain to educators how the symptoms of dysautonomia arise abruptly and make in-person classes difficult (4)? Educators may be far more likely to grant accommodations with a doctor's statement of support. It is also important that both you and your child build open communication with your child's teachers and administrators. It may take some time for people who have no prior exposure to dysautonomia to understand it, and these open communication channels will help educators get acclimated to your child's needs and symptoms so they, ideally, develop understanding and empathy over time. Even if you have formal accommodations already in place, teachers may be more likely to reinforce and respect those accommodations when they have a personal understanding of your child's needs. Option 1: Individualized Education Program (IEP) An IEP may be suitable for a student who does not need full-time distance learning, but would benefit from accommodations for frequent absences, modified educational goals, and support to meet those goals. This may involve counselors, teachers, and school psychologists working with you and your student to develop customized learning goals that fit your student's needs and abilities. IEPs are free of charge in public schools, and the school should provide any support services needed (e.g., a tutor) to help your child achieve their education goals (4). 504 Plans are similar to IEPs with one major difference - they do not outline specialized education plans or goals, but rather focus on ensuring accessibility accommodations. So, if your student does not need any modified education plans, but does need assurance of accessible education, then a 504 Plan may be ideal (6). Option 2: Homebound services Homebound services may look a little different in each school system, but they are, essentially, some type of education provided at home (or another public location, like a library) for students who cannot attend school due to medical reasons. Homebound services can be offered short-term or long-term, and allow students to learn the same subjects as their peers (5). When using homebound services, schools may also provide families with needed technology, such as computers, and encourage multiple avenues of communication through email, phone calls, video conferencing, and virtual learning environments, such as Blackboard. However, some schools may be resistant to providing homebound services because they can be expensive, may require extra teacher time, and they place significant responsibility on the student and parent(s) to manage the child's education (1). Of course, homebound services may be more readily available due to COVID-19, when many school systems are providing distance learning options for all students. One student writes in her blog that she had tried to get distance learning accommodations for years without success. Now that she can learn from home due to COVID-19, her migraines have dramatically improved (2). As mentioned above, it can be frustrating to be denied needed accommodations for years only to have them granted during a pandemic. The silver lining may be that while distance learning is challenging, teachers, administrators, and students are all growing more acclimated to this e-powered style of education. Your future battle may be advocating for the continuation of distance learning for your child, as needed, when the majority of students return to in-person classes. Option 3: Tutoring Tutoring can often be incorporated into IEPs and homebound services, or families can hire their own tutors to supplement their child's education. A major benefit of tutoring is that it is more flexible and casual than formal classroom instruction. If your child has struggled to keep up with education goals due to their dysautonomia, tutoring may provide that comfortable, "low-stakes" environment that helps them learn without added anxiety. The one-on-one nature of tutoring also means that your child and their tutor can focus on your child's specific challenges (5). I tutored for several years in my twenties and it worked well to accommodate my own dysautonomia because I could arrange my own hours and tutor via video conference when I was in a flare. I loved working with homebound students and students with IEPs because it filled my daytime hours when other students were in school, and I felt I could use my own experiences of living with chronic illness to connect with students who needed adjusted learning environments. In other words, you may have a lot of options for tutors if you are looking for someone to tutor during daytime hours, and you may also want to consider a tutor that has experience with IEPs and chronic health conditions. Option 4: Hospital-based learning Many hospitals provide education support for children who spend long stretches of time in the hospital. Typically, a nurse, social worker, or case worker can help direct you to on-site education resources. Support usually comes in the form of classroom learning, which is small groups of children who are taught in a hospital classroom, and bedside learning for children who are too ill to leave their hospital rooms. Hospital educators are licensed teachers, will work with a child's home school, and should work around the child's medical tests and energy levels (4). Remember that your child may need some type of combination approach - flexibility is key! For Parents School may be low on your priority list when you are helping to manage your child's medical care and day-to-day health. Here are a few tips for education support: Our tips for parents come from this awesome blog by a woman who homeschools her children with chronic illness (7). A brief recap... Know your child's signs. A sign may be a look, expressing irritability, a lack of focus, etc. Your child's signs probably signify pain or exhaustion, and when the signs arise it is always best to take a break. Know your child's prime hours. Some people with dysautonomia struggle in the morning or have a late-afternoon slump. When does your child function best? It's probably not realistic to do school work seven hours a day, so try to maximize those prime hours. Watch for depression. Your child may feel depressed if they have minimal energy to engage in "typical" activities for their age, like school. Our article, You're Not Alone: Understanding Depression and Chronic Illness, may be a good place to start to learn how depression and dysautonomia may coexist. Try to stay socially connected. Connection can be a strong tool to manage depression, and your child may be feeling a lack of connection if they are homebound, especially in the age of COVID-19. While in-person interaction with friends may not be an option, encourage your student to stay connected with others through email, phone calls, video chats, and even participation in vetted, online support groups or interest groups. You could also talk with your child's teacher to have their classmates write letters, emails, or put together a small package. Let go of extras. It can be enticing to encourage, or even push, your child to participate in extracurricular activities that they have always enjoyed. If your child is struggling to keep up with school, let alone extracurriculars, this encouragement could quickly turn a beloved activity into a source of stress. You may want to consider asking the organizer if there is a way your child could decrease their responsibility, such as sharing an officer position in a club with another person, or if the activity is something that your child can drop-in on only when they feel healthy enough to do so. If modifications aren't possible, consider letting go of the activity. Your child can always return to it if their health improves. Prepare for good days and bad days. This blogger has created good and bad day lists with her son. On good days, he works down a master list of assignments for each subject. This helps him use his energy on substantial schoolwork, rather than trying to figure out what to do next. His bad day list includes less taxing activities that are still mentally stimulating, such as creating a YouTube playlist of course content, listening to an audio book, or finding relevant current events online. What if YOU are the one with dysautonomia and you are suddenly responsible for managing your child's distance learning during COVID-19? Parents all over the country are struggling to manage distance learning in the age of COVID-19. As you navigate these times, please, please take it easy on yourself. You are parenting, managing a debilitating chronic illness, AND you may suddenly be a homeschool teacher, among all of your other obligations. It's okay to get frustrated. It's okay to be overwhelmed. It's okay to set your to-do list aside. And it's okay to say "good enough." You may also have an option of whether your child attends school in-person, remotely, or some combination of the two. Know that whatever you choose for you and your family is the right choice. For example, if your child's school district is holding classes in person, you may worry about your child catching the virus and exposing you and the rest of your family. If this is the case, you may want to request distance learning accommodations. Or, perhaps, you have the option of in-person classes and you just don't know how you will manage your days without the break from parenting that school provides. In this case, you may want to have your child attend in-person classes, while ensuring that both your child and their educators practice precautionary measures to keep you and others as protected from the virus as possible. If you do decide to move forward with distance learning, here are a few tips to help you manage it all: If you have the resources to hire help, such as a tutor or housekeeper, you should not feel guilty for doing so! Do what you need to do to get through this unprecedented time. Maybe you don't have the resources for professional help, but you may be surprised at who is willing to pitch in! Perhaps a grandparent may want to assist with schooling, or your spouse could rearrange some of their obligations to help. This may even be a good time to team up with another parent, or small group of parents who want to share distance learning responsibilities. As long as you all agree to keep your pod tight to minimize risk of spreading the virus, your children could "switch off" between parents so that you have some days that you are not responsible for schooling. Remember that your family's physical and mental health are priorities during this time. People who are frustrated or in pain can lash out. Try to forgive your child's outbursts, as well as your own! Most importantly, be sure to give yourself and your child(ren) breaks as you need them, and don't forget to still find ways to have fun (7)! For College Students If you are a college student with dysautonomia, you may have options as to whether your education is online or in-person, and your options have likely been dramatically impacted by COVID-19. Deciding whether or not to attend college in-person when you have dysautonomia, let alone when you have dysautonomia AND there is a pandemic, is an important and difficult choice. Here are some things to consider: Dining: If you have dietary restrictions, you should definitely do some research into how accommodating and flexible dining is on any potential college campus. Some questions for an admissions counselor could include: What food options are there for your specific dietary needs? What are the hours of different dining areas (i.e., are they open when you typically need food)? Where are the dining options located in relation to your dorm and classes (i.e., how far will you have to walk to get food if you do not feel well)? Considering COVID-19: Many universities have changed their dining arrangements to minimize the risk of spreading COVID-19. This may include restricted dining hours, or prepackaged meals delivered to dorm rooms. If you use diet to manage your symptoms, then you should evaluate whether or not COVID-19 dining rules could impact your health. One person with chronic illness reported that limited food options on campus during COVID-19 was a major reason he decided not to return to campus. He knew his health could quickly deteriorate without easy access to the foods he needed (8). Scheduling: Every college student knows the stress of enrollment, especially when they need to take those difficult to get into courses. In addition, people with dysautonomia have to consider what times of day they can realistically get to class. Early mornings are out for most of us, and back-to-back classes without a long enough break to lay flat may also limit your options. Talk to your advisor(s) about any scheduling accommodations you may need. At some universities, students who register for accommodations through disability services get earlier enrollment slots. Scheduling can be one reason people with chronic illness prefer online courses - oftentimes, they can be completed on more flexible timelines, and even when they are scheduled for specific times you can save energy by learning in the comfort of your home environments (and maybe your PJs; 9). Considering COVID-19: Similar to dining, the availability of classes and opening hours of other on-campus services, such as the gym, may be limited during COVID-19. One student talks about how he has to plan his exercise at precise times to avoid exacerbating symptoms (8). If you have dysautonomia, mild exercise may be an important part of your health routine, but you likely also have to be meticulous about planning it around your eating, resting, and class hours to avoid negative symptoms. Will this be possible with COVID-19? Medical Care: A major consideration for college attendance is how you will get access to your medical care, especially if you attend school far from home. Some students coordinate appointments with their specialists when they are home on breaks, and are able to get medications and other medical supplies mailed to their universities. Even if you are able to coordinate most of your medical care from afar, you should still communicate with local providers to ensure someone can help you in emergencies. Is the university health department aware of dysautonomia? What is the reputation of the local hospital? Considering COVID-19: It is daunting to think about a potential outbreak of the virus at your university, but it is an important precautionary measure to consider if you have dysautonomia. So, if there is an outbreak, do the local healthcare facilities have the capabilities to handle it? Would the local providers know how to manage COVID and your dysautonomia (8)? Support: Support is important for anyone living with dysautonomia. It may be especially important if you are attending college in-person far away from your typical support networks of friends and family. If you are being assigned a roommate, you may want to let your college know about your condition and the type of environment you need to stay healthy so that they can match you with someone with similar habits or needs. You could also talk with admissions and disability services about any available support or advocacy groups on campus. Considering COVID-19: While emotional support is absolutely critical as you attend college with chronic illness during a pandemic, you may also want to consider the more tactical meaning of the term support. What is your university's policy for quarantining and isolation if you get COVID-19 while on campus? Would someone be able to help you with day-to-day tasks if your family is far away, and it is not safe for you to go home? It is important you discuss the possibilities with staff, faculty, and your family so that you have an idea of how you could handle the situation if you do get sick. Mental Health: College is a time filled with tremendous adjustment for everyone. It may be particularly difficult when you factor in chronic illness. We all know the level of planning, foresight, flexibility, and management that is required to get through day-to-day tasks with dysautonomia, and it is important that you take the time to honestly assess whether you feel up to managing your health needs in a college environment. You may even consider talking through your options and concerns with a mental health professional. Remember that you should never feel ashamed if you decide that attending college in-person is too difficult or stressful given your circumstances. You made an honest and brave decision! There are several alternative options that range from entirely online programs to attending some classes in-person at a local school while you live at home. Considering COVID-19: If you have felt any type of anxiety or unease as you have read through these considerations, you may want to think about attending college remotely, for now. There is no reason to put yourself at physical and mental risk, and you can always attend college in-person when it is safer to do so. Resources Article Citations Jaress, J. & Winicki, E. (2013). Our Children with Chronic Illness in School: Finding and Bridging the Gap. Georgia Department of Education IDEAs Conference. https://www.gadoe.org/Curriculum-Instruction-and Assessment/SpecialEducationServices/Documents/IDEAS%202013%20Handouts%203/Our%20Children%20with%20Chronic%20Illness%20in%20Schools.pdf Rosewater, J.T. (2020, July 5). Access to Distance Learning for Students with Chronic Illness. Third Estate Art Quaranzine. https://www.thirdestateart.org/quaranzine/2020/7/2/m437w6bfalev0qnk82hel5dutkwhc6 About IDEA. (n.d.). US Department of Education. https://sites.ed.gov/idea/about-idea/#Rehab-Act Pollio, L. & Sciolla, J. (2019, October). Balancing Academics and Serious Illness. KidsHealth. https://kidshealth.org/en/parents/academics-illness.html Lee, S. (2020). Academic Support for Students with Serious Illness: Learning Options, Resources & Tips to Help Students Succeed in School. Community for Accredited Online Schools. https://www.accreditedschoolsonline.org/resources/student-serious-illness/ What is the Difference Between an IEP and a 504 Plan? (2019, April 30). University of Washington DO-IT (Disabilities, Opportunities, Internetworking, and Technology). https://www.washington.edu/doit/what-difference-between-iep-and-504-plan#:~:text=The%20504%20Plan%20is%20a,access%20to%20the%20learning%20environment Woodie, H. (n.d.) Homeschooling Teens Who Have a Chronic Illness. Blog, She Wrote. https://blogshewrote.org/homeschooling-kids-with-chronic-illness/ Spangenburg, E. (2020, August 3). Student Voice: 'How Can I Ensure My Own Survival When There are No Guarantees for Even My Healthiest College Classmates?' The Hechinger Report. https://hechingerreport.org/student-voice-with-diabetes-and-opting-to-stay-off-campus/ Donovan, J. (2015, July 21). How Online Learning Benefits Students with Chronic Health Issues. ValuED. http://blog.online.colostate.edu/blog/online-education/how-online-learning-benefits-students-with-chronic-health-issues/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF Link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:9be94802-c9d3-41e0-9f7d-90062a75c719
  5. By: Chelsea Goldstein, Dysautonomia Information Network If you are working and managing your chronic illness stop now. Take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. It is difficult for anyone to have a career and manage the responsibilities of life such as family, household tasks, and self care. Throw chronic illness into that mix, and anyone who can balance their health and a career is a superhero. Or magician. Maybe a bit of both. If you aren't working, but are managing your chronic illness, remember that taking care of your health is an important full time job. Stop, take a deep breath, remind yourself that you are a rock star, and give yourself a high-five. Chances are you are doing a heck of a lot to make this world a better place (whether you realize it or not), and that is just as commendable as a traditional career. The rest of this article is for the people who are in typical work environments and need some ideas on how to make those environments more chronic-illness friendly. Adjusting Your Career to Fit Your Needs Consider adjusting your schedule. Offset Schedule. For many people with chronic illness, especially dysautonomia, certain times of day are the most symptomatic. For me, mornings are toughest. I need several hours to allow my body time to "calibrate" from sleep to an awake state. If you also have a tough time of day, talk to your employer about working around that time. Can you start work at 10am and work past 5pm? Can you take a longer lunch break and start early or stay late? One my previous employers actually liked the idea of me starting late and working past 5pm because it meant I could cover my organization's occasional evening activities. Work from Home. Working from home is becoming more and more common, and can be an ideal solution for people with chronic illness. If you do not currently work from home consider if your job has any responsibilities that can be accomplished from the comfort of your couch. In your PJs. Document how much time those responsibilities take each week, and approach your boss about the option to work from home while you accomplish those tasks. In all of my positions, I have tried to advocate to work from home on Wednesdays: this one work-at-home day gives my body a much needed rest midweek and helps me get to the weekend. Flex Schedule. Some companies may be open to flex scheduling, which loosely means that you are required to work a certain amount of hours per week and your employer is flexible about when you get those hours in. A couple of my past positions have allowed flex scheduling, and it has been very helpful in managing my health conditions. I can work longer hours when I am feeling well, and rest when my body is more symptomatic. However, flex scheduling can end up causing problems if it is not approached well. Here are a couple of tips to make it a sustainable accommodation for your health and career: Flex scheduling can mean different things to different people, so it is very important that you and your employer have a strong mutual understanding of what this means from the beginning (1). Create a document that you both review, and even sign, outlining the terms of what your schedule will look like to avoid any miscommunication issues down the road. Create a loose weekly schedule for yourself and make sure you track your hours well. Your schedule can be adjusted to accommodate your health, but it will provide a guide to ensure you do not overdo it (Hello, causing a flare because I worked a fourteen-hour day when I felt well), or underdo it (Wait, it's Friday already?!) Consider adjusting your responsibilities. Minimize Them. Take time to make a thoughtful list of all the tasks you do in your job. Then, identify the ones that are the most difficult for you to accomplish with your health. Are all of these tasks absolutely critical to your job? Try to eliminate the ones that aren't. Are there ways you could modify some of them to be more inline with your health? Share Them. Use that same list and think about your coworkers. Are there any tasks that could be accomplished more easily by your coworkers who do not have chronic illness? If so, you can offer to exchange these tasks with some of your coworker's tasks that might be more doable for you. You might discover a win-win situation (2). Change Them. If modifying your job duties is not possible, but you enjoy working at your company, consider transferring to a different department or position with a job description that is more inline with your health needs (2). Adjust Your Space Comfortable Chair. If you work in an office setting with a chronic illness, chances are the place you sit for most of the day has a big impact on your health. Identify your major symptoms to determine the best chair for you. Do you get frequent hip or shoulder pain? Do you feel dizzy when you sit up straight for long periods? Talk with your employer to get the right chair for you, or modify an existing chair with ergonomic accessories. Other physical aids. Record what a typical day looks like for you, and identify when you have the most trouble. What physical aids could help you through those moments? Would an adjustable desk relieve some pain? Would speech to text software help with your brain fog? Would blue light glasses minimize your daily headaches? (2). Make Yourself a Care Kit. Think about all the things that you could possibly need to get through a tough day at work, and make sure those things are stored in your office. My care kit always includes salty snacks, extra medications, a heating pad, an ice pack (in the office freezer), IcyHot, a reusable water bottle, electrolyte drink mixes, doggie poo bags for vomit, a pair of comfy shoes, a change of clothes, a blanket, a desk fan, and a collection of motivational quotes. When your work space just really does not meet your needs Perhaps, you have tried to adjust your work space to meet your needs, but it is just not working. Maybe the lighting is causing headaches, or your trip to the bathroom is too far, or you don't have a private enough space to take care of your health needs. Change Your Space. It may be time to talk to your employer about changing your work space. It can be scary to approach your boss about changing your work space. You may be afraid that your coworkers will think that you are trying to snag a more cushy office. Just remember that this accommodation is going to help you continue to be a good employee. Before talking to your employer, spend some time making a list of the most important elements of a work space you need to manage your health. Then highlight the ones that are absolutely necessary, and write a short justification as to how they will help you maintain your current position. Also identify how your current work space is not meeting those needs, and if there can be any modifications to that space. You may also want to do a little reconnaissance before you approach your employer. Are there any unused spaces in your building that would be better suited for your health needs? Employers may be more likely to grant your request if you present them with a solution. Or, are there any coworkers who may want to trade spaces with you? It may be that your coworker wants to be near your window, but you want to be closer to the bathroom. This could be a win-win situation. Access Additional Space. If you can't change your work space, you may want to ensure access to a space where you can retreat when your symptoms flare. Perhaps, your company doesn't have the exact work space you would like available. Even so, they are still required to make reasonable accommodations for your health needs so it may be time to get creative. Return to your list of elements of a work space that you need to manage your health. Which ones are not being met in your current space? Is there any additional space you can get access to, even occasionally, to address these elements? For example, being upright for long periods of time can be difficult for people with dysautonomia. Sometimes, fully reclining for short periods can restore blood flow to the brain and improve symptoms. I used to be in a shared office space without anywhere to lay flat. I worked with the office manager to reserve a small conference room for fifteen minutes a day, midday, so that I had a guaranteed time I could recline, and I kept a yoga mat at the office. You could also talk to your employer about reserving a close parking space so you can retreat to your car, when needed. Even a dark storage space could be a place to relieve a budding headache. Get creative. Workday care routine Create a self-care routine for your workday. Prioritize Nutrition. When you live and work with chronic illness, planning food, cooking, and packing lunches can be low on your priority list. However, you might also have specific dietary needs and good nutrition likely improves your health. Try to pack your lunch so you know you have good food to fuel your body throughout your workday. Meal prepping on the weekends can be a big energy saver throughout the week. Invest in food storage containers that have multiple compartments so that you just need to grab one each weekday before you go to work. If preparing food is just not possible for you, create a list of healthy, premade meal options that meet your dietary needs. This could mean perusing your grocery store on a weekend to identify nutritious and quick meals, making a list of good lunch options at local restaurants, and/or utilizing a meal delivery service. Get Physical. Research demonstrates that physical movement throughout the workday is beneficial, even for people with chronic illness. This is especially important if you spend most of your time at a desk. Make yourself move your body for a few minutes each hour, even if it is stretching your arms, legs, and fingers while seated at your desk (3). If you are someone who will forget to do this, set an alarm for 55 minutes past each hour until it becomes habit. Even more, many of us stare at screens all day and forget to "stretch" our eyes. The 20-20-20 rule is a great reminder to give your eyes a break throughout the workday. It states that every 20 minutes you should look at something 20 feet away for 20 seconds (4). Cultivate Your Mental Health. At times, work can be draining and stressful even if you love your job. Try to practice mindfulness when feel overwhelmed. Take a break to focus your mind on the present moment. What do you see? What do you hear? What do you smell? Continue this exercise until you feel a bit calmed down. By focusing on the present moment, we often realize that a stressful situation may not be as intense as we believe it to be and we are better able to manage that situation (3). You should also have a go-to activity that you can do during work hours to cultivate your mental health. Many companies have workplace wellness initiatives that offer group meditation, yoga, support groups, or wellness consultations. Take advantage of your company's offerings. You could also find a calming space near your office to take a walk, keep a gratitude journal, keep a list of calming quotes, or try guided meditation with an app, such as Calm. When Tips and Tricks aren't Enough Perhaps, you have done everything in your power to try to maintain your job and manage your health. Maybe you are in a severe flare and the adjustments you have made just aren't cutting it. Or your employer may be reluctant to grant accommodations. What now? Temporary Leave. You may consider trying a temporary leave to regain control over your health. Do you have any PTO or sick leave? I know it may be tempting to save your PTO for a vacation, but you won't enjoy a vacation if you aren't well. Also research your company's policy on extended medical leave. Knowing the policy will make you feel more confident in approaching your employer to take some time away from work (2). If you are considering taking a temporary leave, it may be helpful to be open about your health struggles with your coworkers, document how your job is making your health worse, and identifying the reasons why you think a temporary leave will help you return to work in the long run. If possible, it may be helpful to get some documentation from your doctor indicating that you need temporary leave to manage your health (2). Try to prioritize your health during a period of temporary leave. You may worry about finances if your pay is suspended, and you may be tempted to use this time to get things done around the house. Remember that if you do not try to reduce stress and care for your body during this period, you may not be able to sustain your job in the long run (2). Know Your Rights. Employers are legally obliged by the ADA to make reasonable accommodations for your health. The Americans with Disabilities Act (ADA) requires all employers to grant individuals with disabilities reasonable accommodations to perform essential functions of their jobs as long as the accommodations do not put undue hardship on the company (5). All of adjustments and modifications we have discussed in this article are considered reasonable accommodations for someone who needs them to complete their job duties, but some employers may be reluctant to grant them. Knowing your rights through the ADA could help you approach a difficult employer with confidence. Some companies have standardized process and forms to request accommodations. You should go through these channels. If your company does not have a formal policy, you can start with drafting a letter to your employer using this format. It may be helpful to include information about your medical conditions or a supporting letter from your doctor (6). Know that this process may take some time, and do not waiver from doing what is right to care for your health. Resources Article Citations Driscoll, E. (2019, May 5). The Challenge of working with dysautonomia. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-challenge-of-working-with-dysautonomia-r141/   Laurence, B. (2020). What is the difference between Social Security Disability (SSDI) and SSI? Disability Secrets. https://www.disabilitysecrets.com/page5-13.html Laurence, B. (2020). What are the rules and requirements for Social Security Disability cases? Disability Secrets. https://www.disabilitysecrets.com/the-rules.html Benefits planner: disability, how you qualify. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/qualify.html You may be able to get Supplemental Security Income (SSI). (2020). Social Security Administration. https://www.ssa.gov/pubs/EN-05-11069.pdf State disability insurance. (2019, May 17). Eligibility.com. https://eligibility.com/state-disability-insurance Benefits planner: family benefits. (2020). Social Security Administration. https://www.ssa.gov/planners/disability/family.html#anchor3 Additional Resources Apply for Social Security Online. https://www.ssa.gov/disabilityssi/ Disability Secrets. http://www.disabilitysecrets.com/ Life After Work, When Chronic Illness Makes You Quit a Job You Really Love. https://creakyjoints.org/blog/life-after-work-when-chronic-illness-makes-you-quit-a-job-you-really-love/ National Organization on Disability. http://www.nod.org Online Lawyer Source. http://www.onlinelawyersource.com/social-security-disability/index.html NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:2a967798-3e0f-4e71-bed3-97b81419b970
  6. by Chelsea Goldstein, Dysautonomia Information Network Your research on assistance animals may have you feeling confident that a service dog could help you live more independently and sustainably. If this is you, rock on and read on. If you are still unsure of whether a service animal is the right fit for you, consider reading It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs) before continuing this article to better understand if a service dog is your best option (but still, rock on). Remember that a service animal is trained to help an individual with a disability with specific tasks related to their disability. For example, a dog may be trained to sense pre-syncope and alert their handler so they can get to a safe place and recline. If you are ready for a service dog, it can be overwhelming to start the process. We have all heard how expensive and time consuming it can be to get/train a service animal, so it is important that you understand your options to determine which one is best for your needs, resources, and abilities. What to expect Understanding the process can minimize future frustrations. Training. Service animal training is primarily focused on two major qualifications that are required by the ADA: 1) the animal can assist the handler with specific tasks related to their disability, and 2) the animal can remain calm, focused, and well behaved in a variety of stimulating public settings (1). The ADA, however, does not specify how animals should receive such training, and there are not any federally required certifications or tests to qualify service animals. This lack of federal regulation is a double-edge sword: it protects the rights of individuals with disabilities, but it also makes it easier for others to abuse the designation of service animal, which can be dangerous if the animals are not properly trained. It is important that you take service animal training seriously to ensure you can safely and responsibly work with your dog when out and about. Time Commitment. Depending on the route you choose, the time commitment of getting and/or training a service animal varies. However, expect that it will take a significant amount of time and focus to ensure you and your dog have a productive and sustainable working partnership. Even if you get an already-trained service animal, the certifying organization often requires that you stay on premise for several weeks to months for intensive joint training (2). Expense. Service animals are also known to be expensive. Costs may vary, but an already-trained service animal could cost upwards of $25,000 (2). While this is an extraordinary expense, there are ways to reduce it. Many organizations will help procure financial support that drastically reduces, or even eliminates, the final cost. More cost-effective solutions include getting training for an animal you already own, or even training your animal yourself. Goals. As mentioned previously, there are not any federally-mandated certifications or tests for dogs to become service animals. However, the rights of the handler are only upheld if the dog is trained in specific tasks that support the handler's disability, and if the dog is well-behaved in public. A number of organizations determine readiness of a human and animal pair to work together in public by administering a Public Access Test (developed by the organization or a coalition of organizations). Assistance Dogs International (ADI) is one such coalition that has established minimum standards for training and testing. Many reputable organizations use their Public Access Test. Upon passing the test, these organizations often give the human and dog team some type of certification. Beware that training organizations vary widely, and a good place to start your search may be this list of ADI accredited organizations that can be found on their website. Getting a Service Dog: Option 1 Perhaps the most well-known way to acquire a service dog is to purchase a dog that has already been selected for service work and trained by a reputable organization. The Process. Many people consider buying a service dog from a reputable training organization. This is certainly a good option to ensure that your dog is professionally trained with stringent standards. It also provides you with a lot of guidance on how to work with your new animal. However, the process of getting a service dog is more complicated than simply picking one out (2). The actual steps may vary by organization, but the process generally involves interviews, assessments of your needs, and joint training with your new service animal. For example, one well established organization requires interested handlers to complete an initial and full application. Then they have a phone interview and fill out medical paperwork, followed by an in-person interview. Only then are they accepted as a handler. Even after this arduous screening process, they may be put on a wait list until a dog with the skill set and temperament to meet their specific needs is available (3). Finally, the handler will usually be required to stay on-site for several weeks to a month to complete joint training with their dog (2). These steps may seem overwhelming, but they are there to ensure that people getting service animals are fully supported in their needs, and that the training can be sustained and helpful to the handler for many years. Beware of any training organizations with minimal screening requirements. Pros. One of the major pros of this option is that the dogs are selected or responsibly bred specifically to be service animals. These strict selection and breeding criteria provide strong probability that the animals have the right temperament for service dog work, and are receptive to training. Even still, 50-70% of service dog candidates do not pass testing and certification. While this drop-out rate may be high, it also means that only the most well-qualified dogs are the ones being matched with handlers (1). Do not worry, there are often long waiting lists to adopt service dog drop-outs because they are still very well trained and good with people. Additionally, these dogs are generally chosen for service training as puppies, which means that they will not have any negative behaviors due to improper past training that need to be addressed. Cons. This is usually the most expensive option for getting a service dog. While it can cost around $25,000, there are often avenues for financial aid (1). Additionally, some potential handlers reported that they were deterred from this option because they were on wait lists for over two years and still weren't matched with dogs. Other people have said that they did not have enough time to fully bond with their dog before leaving the training facility, likening the first year of living with a school-trained service dog to a new marriage: there is a lot of adjustment before you can effectively work together (4). Getting a Service Dog: Option 2 Another option is to take your own dog to a professional service dog organization for training. The Process. Sometimes pets can make excellent service animals. This may be an appealing option if you already own a dog that shows promise as a service animal, and the thought of adding another dog to your household seems a bit overwhelming. First, you should honestly assess your pet's temperament to decide if they will be suitable for service dog work. Service dogs need to remain calm, even in unfamiliar settings, have a willingness to please you, should be able to learn and retain information, should be reliable, and are socialized to many different environments (1). Many companies that train service dogs will do a temperament assessment to ensure the animal is a good fit for their program (2). Again, there are no federal mandates for service dog training, but many reputable organizations will require about six months to complete training courses and prepare for a Public Access Test. Training is often administered in small groups of dog and handler teams, with support from the trainers to reinforce the skills at home. Some organizations also offer one-on-one training (1). The training program that works for you is highly dependent on your expectations, budget, and needs. Take some time to contact several reputable organizations in your area, if available, and discuss what type of programs they offer before making a final decision. Most reputable training programs will be considered completed when you and your dog pass a Public Access Test. Pros. These professional programs often emphasize training for the human-dog team, meaning they recognize that training for the human is just as important as canine instruction to ensure that the pair is successful after the program. They also may include periodic follow-up training to brush-up on skills and address any issues that may arise (1). Additionally, this option usually costs around $5,000 to $10,00 in the US (2). While this is still a large sum of money, it is significantly less than purchasing an already trained dog. Finally, the emotional bond and trust you have already developed with your pet will be invaluable in a successful training experience. Cons. The biggest risk in this option is that there is no guarantee your dog will pass the Public Access Test. If your dog does not pass the first time, the responsible thing to do would be to continue training your dog and take the test again, or choose another option to acquire a service animal. This can result in additional costs. This is why honestly assessing the qualities of your dog before you pay for training is essential. We all know that our own dogs are the most adorable, and most perfect, and most lovable. But if they get extremely excited anytime they see a ball or other dog, they may not be the best fit for service work. This doesn't mean they're any less lovable, they're just not a good fit for the job. Getting a Service Dog: Option 3 Finally, training your own service dog is an option for individuals who are willing to commit a lot of time and effort. The Process. Once again, the ADA does not require a specific type of training for service dogs. This means, you can do it yourself if you are up for the task (1). Similar to the option above, you need to make an honest and thorough assessment of your pet's temperament and qualities. What characteristics would make them a good service animal? What qualities or behaviors may detract from service work? Can your training address those non-serving behaviors? Take your time in the assessment phase. Some experts report that the greatest mistake handlers make is trying to force an unsuitable dog to become a service animal. This can often set the handler up for unnecessary frustration as they fail to train an animal to do tasks they're just not suited to do (5). Remember, that a great pet does not necessarily make a good service animal. For example, a playful and friendly pet may get too distracted from the service task at hand when in public. Similar to the other options, this process will take time. Experts recommend starting with basic house training, such as sit, stay, and lay down commands, and teaching your dog to eliminate in specific locations on demand. Then, you should work on socializing your animal in a variety of public settings while encouraging them to stay focused on you and the given task. Finally, you should introduce specific disability-related skills that you would like your dog to learn. Pros. One obvious benefit of this option is cost. While there is no upfront fee to train your own animal, there are often extraneous costs to consider such as training books and videos, treats, training supplies, and your time and energy. There are, however, a plethora of resources available online to guide training (2). The American Kennel Club (AKC) Good Citizen Program provides several resources for basic training, and your pet can even be evaluated on ten major tasks. Finally, training your dog yourself provides you with a lot of control and understanding about working with your animal out in public. You will, arguably, learn your dog's quirks and behaviors better than you would if they were trained by someone else. Cons. This avenue can be time consuming, energy draining, and frustrating. But also rewarding. So, in addition to assessing your pet's temperament, you should honestly assess if you feel prepared for the job. If you have limited experience working with animals you should be prepared to do a lot of learning, or consider another avenue. There will be less outside support in this option, so it is important you do your homework with reputable sources to ensure you aren't accidentally reinforcing poor behavior in your animal. Take Home Points Training or getting a service animal is a big step. Here are a few things to remember... Make sure your animal is properly trained. Even if you train your dog yourself, you should consider getting professional input at some point. When looking for organizations to train, or assist in training, a dog don't be afraid to ask the trainers several questions before committing your time and money to an organization (1). A properly trained service animal is an investment in your future. If done right, it can dramatically improve your quality of life (2). However, a poorly trained or improperly represented service animal poses danger to the public and damages the reputations of service dog handlers. This statement from the AKC outlines why the misuse of service dogs is so detrimental to people living with disabilities (1). These options are not mutually exclusive. Your responsibility as a potential service dog handler is to thoroughly review your training options and make an informed decision about the best avenue for you and your animal. You may decide that a combination of approaches is the best fit for your needs and budget. For example, several handlers have reported that they trained their dogs in basic tasks on their own, and they sought professional support for more advanced work. This can dramatically reduce the costs and time commitment of professional training, while also ensuring you have a strong working bond with your dog (4). You will need support throughout the process, especially if you train your own dog. Training a service animal can be emotional and physically taxing no matter what route you take. You may want some professional help if the idea of training your animal yourself is overwhelming. Even if you manage most of the training on your own, it is important to have an outlet for emotional support and feedback. The DINET forum is always a great space for connection, and this Facebook group is dedicated to discussion about service animals for people with POTS. You should also ensure that any housemates are onboard with supporting your training. They need to understand and reinforce the behaviors and tasks you are teaching your dog, and NOT encourage poor behavior. This can be confusing to the animal and jeopardize your training process. Make sure you are working with a reputable organization. The ADI accredits organizations around the world that meet their minimum standards and use their Public Access Test. This list of ADI accredited trainers may be a good place to start your search. Organizations that are members of IAADP have also met a set of minimum standards for service dog training. Whatever organization you choose, make sure that you ask a lot of questions and feel comfortable with the organization's process before you commit. Resources Article Citations Karetnick, J. (2019, September 24). Service dogs 101: Everything you need to know. American Kennel Club. https://www.akc.org/expert-advice/training/service-dog-training-101/ Driscoll, E. (2019, June 4). The ins and outs of owning and training a service dog. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-ins-and-outs-of-owning-and-training-a-service-dog-r222/ Apply for an assistance dog. (2020). Canine Companions for Independence. https://www.cci.org/assets/files/apply-for-an-assistance-dog.pdf Furlong, R. (2006, December 1). Training your own service dog. New Mobility. https://www.newmobility.com/2006/12/training-your-own-service-dog/ Froling, J. (1998). Finding a suitable candidate for assistance dog work. https://www.iaadp.org/type.html Additional Resources Assistance Dog International. https://assistancedogsinternational.org/ American Kennel Club. https://www.akc.org/ Canine Good Citizen Program. https://www.akc.org/products-services/training-programs/canine-good-citizen/ Service Dogs for POTS Facebook Group. https://www.facebook.com/groups/110152023042832/ The Dog Alliance. https://www.thedogalliance.org/training-your-own-service-dog Dog Owner. https://www.dogowner.co.uk/ Lean on Me - The Remarkable Story of a young woman with POTS and the Dog that Keeps her Safe. https://www.dinet.org/member-stories/lean-on-me-–-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:aef8e51b-0f04-4af6-bfeb-f4d32d45f968
  7. by Chelsea Goldstein, Dysautonomia Information Network Pet ownership is known to have positive impacts on depression, anxiety, blood pressure, and heart rate, to name just a few benefits. The advantages of having a furry (or scaly, or feathery) family member are no secret - 68% of US households have at least one (1). The values of pet ownership have been such a hot topic lately, that they have led to some confusion around the differences between pets, emotional support animals (ESAs), and service animals. The misuse and abuse of terms like ESA and service animal have created particular challenges for people living with chronic illnesses and disabilities who may benefit from either of these types of support animals. The rest of this article will clarify the differences between ESAs and service animals to provide a better understanding of how each may or may not be an appropriate addition to your home. What are Service Animals and Emotional Support Animals? It's important to know the difference. Service Animals Service animals are individually trained to perform tasks that help an individual with disability live more independently (2). As defined by the Americans with Disabilities Act (ADA), these animals can support individuals with a physical, sensory, psychiatric, intellectual or other mental disability (1). To be considered a service animal, it is important that the work the animal is trained to do directly supports the individual handler. According to the ADA, only dogs and, in rare cases, miniature horses can be legally defined as service animals. Some state and local laws may have more inclusive definitions of service animals, which will be discussed in more detail below (3). Nonetheless, dogs remain the most common service animal in the US. Labrador Retrievers and Golden Retrievers are the most popular breeds because they are known for their intelligence, loyalty, and patience - all qualities needed for this important work (1)! Emotional Support Animals (ESAs) Emotional Support Animals (ESAs) do NOT fall under the ADA classification of service animals. Rather, they are defined as providing companionship, comfort, and/or emotional support to individuals with psychiatric or mental health conditions (3). An ESA should be prescribed by a licensed mental health professional who will provide the owner with an ESA letter (5). This letter will be important if the owner is bringing their pet places, such as in housing complexes and on airplanes, that may otherwise restrict animals. While there are several online registration systems for ESAs, it is important to note that there is not an official or accredited registration process that is required (6). Dogs and cats are the most common types of ESAs, but any domesticated animal can be classified as one as long as the handler goes through the proper channels. ESAs do not require any specific training, but are expected to be well behaved in public places (5). What Tasks Do Service Animals and Emotional Support Animals Do? Guide dogs have an important job of assisting a person who lives with vision impairment, and they may be one of the most recognized types of service dogs. However, service dogs are trained in a variety of specific tasks to help individuals with different needs. Types of Service Dogs Guide Dogs help people with severe vision impairment or blindness travel and navigate their environments (2). Hearing or Signal Dogs are trained to alert individuals with severe hearing impairment or deafness when there is a sound, such as a knock on the door (2). Psychiatric Service Dogs work to detect and lessen the effects of psychiatric episodes. For example, they may turn on the lights for a person with Post Traumatic Stress Disorder, interrupt their handler if they are self-mutilating, or keep a disoriented person out of danger (2). Sensory Dogs are primarily trained to assist people with autism. They can do a variety of tasks for their handlers, including calming them if the person is experiencing sensory overload (2). Seizure Response Dogs may stand guard over people who have seizures, or warn them to sit down if they can sense a seizure coming (2). Mobility Dogs can assist with tasks such as retrieving items from the floor, pulling wheelchairs, or pushing elevator buttons (1). As mentioned above, all service dogs are trained in specific tasks for their handler. The categories of service dogs discussed here are not mutually exclusive or exhaustive. For example, a dog could be trained to help an individual with mobility difficulty pick things up off the floor, and also trained to sense when that person is about to have a seizure. It is also important to note that psychiatric service dogs are different than ESAs because they are trained in instrumental tasks, even though they likely provide companionship and emotional support to their handlers, like ESAs. This is not to devalue ESAs - their support and companionship for individuals with mental health conditions can be life changing. Individuals with dysautonomia can benefit from both service dogs and ESAs. For example, someone with POTS-induced syncope could benefit from a dog trained to provide a warning signal when they sense pre-syncope symptoms. This could help the person find a safe place to sit or lay flat and prevent dangerous situations, especially when out of the home (1)! An ESA could help someone who has health-related depression and/or anxiety. Companionship of an ESA could be especially beneficial for a person who feels isolated due to the limitations dysautonomia has placed on their life. The most important consideration for getting a support animal is to have a strong and realistic understanding of one's specific needs. Where are These Animals Allowed? Knowing the laws about where you can bring your animal can help you prepare for any pushback. Service Animals According to the ADA, service animals are allowed in housing, workplaces, on transportation, in educational institutions, and in any other spaces that allow the public, customers, or program participants (1,2). This includes businesses or programs that have a "no pet" policy because service animals are not considered pets (2). These organizations cannot charge any pet fees for service animals, and breed restrictions do not apply to them. They may, however, charge fees for damage caused by the animals (2). If you have a service animal, others cannot ask you for proof of the animal's certification, or about your disability. They can only ask: Is the animal required because of a disability? What work or task has the animal been trained to perform? (1,2) The Air Carrier Access Act (ACAA) states that individuals can fly with their service animals without additional fees. The airlines can ask the following questions for "verbal assurance" of the need for a service animal: What tasks or functions does the animal perform for you? Would you describe how the animal performs these tasks for you? (2, 7). Emotional Support Animals Emotional support animals are not protected by the ADA and, therefore, are not granted the same access to public spaces as service animals (5). However, the ADA is a federal regulation, and each state may have different laws regarding where ESAs are allowed (1). If you have, or are considering getting, an ESA, it may be wise to learn about your state's regulations here. ESAs do, however, have some protections under the ACAA and Fair Housing Act. The ACAA allows individuals to fly with their ESAs without additional charges. Airlines may ask the owner for an ESA letter stating that the individual has a mental health condition, that the animal is needed for travel, and information regarding the issuing professional's date and type of mental health licensure (2). ESAs are also considered "assistance animals" under the Fair Housing Act. This means that housing entities must make reasonable accommodations to allow ESAs in housing units that may otherwise prohibit pets. They also cannot charge pet fees for ESAs, and breed restrictions should be waived (8). Regulations, Responsibilities, and Etiquette Unfortunately, we have all heard of (and maybe even witnessed) instances when people take advantage of service animal and ESA classifications to get their pets places they wouldn't normally be allowed. It is important to know the regulations and responsibilities of these animals in order to protect the rights and needs of people who truly need them. Regulations The term service animal is based on federal regulations set forth by the ADA. These regulations are upheld nationally, and some common questions about them are answered here. It is also important to note that several states have individual laws about the inclusion and exclusion criteria of service animals and ESAs. While the ADA supersedes state law, these regulations can provide more clarity on where ESAs are allowed in each state. They can be found here, or on your state's Attorney General website. Responsibilities As a handler, it is your responsibility to ensure that your service animal or ESA is behaved in public, and trained to support you in specific tasks in the case of service animals. While there is not a single training or accreditation required by the ADA for service animals (9), it is dangerous and irresponsible to have a poorly or improperly trained service animal. In an era when service dog vests are readily available online, individuals living with disability, especially invisible disability, are judged and put in danger when people don't believe their service dog is legitimate (1). Read our additional articles on acquiring and training service animals to learn more about responsible options. Etiquette For Handlers: The ADA states handlers need to have control of their service animals. This is often done by keeping the animal on a leash or harness when outside the home, but there may be instances when such a device restricts the animal's ability to assist their handler. In these cases, the animal should be trained to respond well to voice commands (2). While businesses are not allowed to deny a service animal access to their spaces, they can ask a handler and service animal to leave if the animal's behavior is disrupting their business or posing a threat to other patrons. For example, a dog that is barking repeatedly in a movie theater could be asked to leave, as well as a dog that is growling and snapping at other shoppers in a grocery store (2). This is why it is important to ensure that service animals are well trained to be in a variety of public spaces. For passersby: Passersby should always remember that service animals are not pets, and stopping to pet, or otherwise distract, a service animal while out in public can be dangerous. These animals need to be focused on their handlers at all times to ensure they do not miss the subtle cues they need to perform their trained tasks (1). Please remember this next time you pass a service animal, and do not hesitate to tell passersby that they may not pet your service animal while it is working. Resources Article Citations Driscoll, E. (2019, June 4). The ins and outs of owning and training a service dog. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/the-ins-and-outs-of-owning-and-training-a-service-dog-r222/ Brennan, J. (2014). Service animals and emotional support animals: Where are they allowed and under what conditions? The ADA National Network. https://adata.org/guide/service-animals-and-emotional-support-animals ADA requirements: Service animals. (2020, February 24). U.S. Department of Justice Civil Rights Division. https://www.ada.gov/service_animals_2010.htm Wisch, R. (2019). FAQs on emotional support animals. Michigan State University Animal Legal & Historical Center. https://www.animallaw.info/article/faqs-emotional-support-animals Gibeault, S. (2019, October 3). Everything you need to know about emotional support animals. American Kennel Club. https://www.akc.org/expert-advice/news/everything-about-emotional-support-animals/ Harper, H. (2019, August 28). Do you need an emotional support animal? Here's what to know. Health.com https://www.health.com/pets/emotional-support-animals Gjelten, E. (2020). Flying with service dogs and emotional support animals. NOLO.com https://www.nolo.com/legal-encyclopedia/flying-with-service-dogs-and-emotional-support-animals.html Assistance animals. (n.d.) Housing and Urban Development. https://www.hud.gov/program_offices/fair_housing_equal_opp/assistance_animals Frequently asked questions about service animals and the ADA. (2015, July). U.S. Department of Justice Civil Rights Division. https://www.ada.gov/regs2010/service_animal_qa.html Additional Resources National Organization on Disability. http://www.nod.org Job Accommodation Network. https://askjan.org/ Americans with Disabilities Act. https://www.ada.gov/ Dog Owner. https://www.dogowner.co.uk/ The Dog Alliance. https://www.thedogalliance.org/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF Link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:7b7e9ba0-1e8f-4e30-bba0-1ce1e0febc88
  8. by Chelsea Goldstein, Dysautonomia Information Network You can't imagine your life without your furry best friend. The two of you have an inseparable bond that brings you comfort, joy, and companionship. Perhaps, your dog has even picked up on your needs over the years and lends a helping paw when you need it (e.g., your dog senses when you are lightheaded and braces their body against yours to provide some stabilization). This companionship has had you considering the benefits of a service dog for some time, but you have always been concerned about costs or adding another canine to your household. However, you just learned that the ADA allows owners to train their own service dogs and you feel confident that you and your pup could make a strong team. If this is you, keep reading for some pointers on starting your service dog training journey. If you are still deciding if a service dog is right for you, consider reading our article, It's Doggone Confusing: Understanding Service Animals and Emotional Support Animals (ESAs). Or if you think a service dog is a good option, but you don't already own an animal or don't want to train one yourself read A Helping Paw: Steps to Get a Service Animal to learn about your options. Pros and Cons of Training Your Own Service Dog There are many benefits to training your own service dog, but it is important to have realistic expectations. Pros Rewarding. Training your own service dog can be an incredibly rewarding experience. Not only will you have pride in all that you accomplish together, but some advocates of owner-trained dogs believe that the bond you build with your dog through an intimate training experience is invaluable. For example, the relationship you have before you train may help your training be more successful, and the deep understanding you acquire of your dog as you train will help you overcome any issues that may arise later on (1). Cost Effective and Timely. Many people choose to train their own service dogs because it is one of the most cost-effective options. It also means you can start your training as soon as you are ready, avoiding lengthy wait lists (1). However, it is important to remember that the training process can still take several months to years, and you will spend some money on supplies and training support. Adaptable. Unlike other assistive devices, service dogs can adapt to your changing needs. If you train your pup yourself, you will feel equipped to continue training your dog in different tasks as new needs arise. One owner reports that this has been one of the greatest benefits of training her own dog (1). Cons Emotionally and Physically Demanding. Training your own dog can be more emotionally and physically demanding than other options. You may feel exhausted at times when the training isn't going as you expected (1). You should also consider your physical needs and limitations when you embark on a training journey. Will you have the stamina to work with your dog frequently? There may be ways you can adapt the training process to your physical needs, but you should make a realistic plan from the beginning. You should also consider the possibility that your dog may not be successful in training. It may help to decide what course of action you will take if your dog does not take to training as expected (2). Hidden Expenses. While training your own service dog can be cheaper than other options, some unexpected expenses may arise. You will likely spend some money on treats, training supplies, vests, leashes, and training support materials like books, videos, and even classes (1). Time Consuming. Similar to other options, training your own service dog can be a long process. One owner-trainer reported that it took two years for her dog to be ready for service work (1). Remember that when you train your own dog, you are the one that has to be committed to training throughout the entire process. Supplies & Resources There are several supplies and resources available to support your training journey. While this is not an exhaustive list, it may give you a good place to start. Training Supplies. The training supplies you get may depend on the type of training you decide to use. Most training involves rewarding your dog with treats, and a treat pouch that hooks to your waistband can be an invaluable tool to ensure treats are ready for immediate reward while keeping your hands free for other tasks. You may even want to get a clicker to use as a training signal. Gear. You can train a service dog without gear, but gear may make the process easier depending on the situation. One owner with arthritis in her hands uses a Gentle Leader that requires only a soft pull to give the dog a command (1). You may also want to get your dog some gear to identify them as a "service dog in training" when you are out and about. This will help passersby recognize that the dog is working and, ideally, they will not distract your dog too much. Emotional Support. Even the strongest human-canine training teams will experience frustration, so it is important that you have a place to process that emotion so that it does not negatively impact your process. What friends or family members would be good supports throughout your training experience? Identify a couple of people before you start, and talk to them about what the process entails. You could also participate in online support forums such as the DINET Forum or the Facebook group, Service Dogs for POTS. Professional Support. Even though you are training your service dog yourself, you should be prepared to utilize some type of professional support throughout your process. Here are a few professional resources that you may find helpful... For assessing temperament: The book, Lend Me an Ear, by Martha Hoffman provides guidance on determining if a dog is suited for service work (1). The International Association of Assistance Dog Partners (IAADP) also shares directions for their temperament test online (3). For basic training: The American Kennel Club (AKC) Canine Good Citizens program can be completed through local trainers and/or a series of online videos. Upon completion of training, dogs can be tested by a local evaluator on ten basic skills, such as walking through a crowd. Owners can also explore local group classes such as those offered at PetSmart. For service training: The Dog Alliance offers the majority of their classes online (4). Top Dog also provides online classes at reasonable costs focusing on owner-trained service dogs (1). Top Dog's training books, Teamwork 1 and 2, are strongly recommended by experts (1). Dog Training Process Your training process will be highly individualized, but we've listed some general steps you should consider. 1. Assess your dog's temperament. Many experts and owner-trainers argue that honestly assessing your dog's temperament for suitability to service work is the most important part of the training process (1). Inadequately assessing your pup could cause a lot of heartache and frustration for you both if you invest significant time, energy, and money into training a dog who just isn't suited for service work. One owner-trainer discussed how her dog was great at performing tasks in isolation, but became easily distracted in crowds. This prompted her to seek professional support after several months of training, and the trainer identified that the dog was just not well suited for service work within two weeks (2). Dogs who excel at service work can be any breed, but you may want to consider some of the common characteristics of specific breeds during your assessment. For example, a scent hound (e.g., Beagle) may always have their nose to the ground triggering them to miss visual ques (1). Of course, true suitability comes down to the individual dog, not the breed. Other characteristics that make good service dogs are a calm demeanor, especially in unfamiliar settings, a willingness to please you, alertness without being reactive, good socialization, and reliable in performing tasks (5). 2. Assess your own needs and skills. Experts often refer to service dogs and their owners as teams because they are consistently working together. Thus, it is just as important to honestly assess your own needs, skills, and ability to commit to training a service dog. First, you'll want to ensure your dog's temperament and size fit your individual needs. For example, people needing assistance with mobility should assess if their dog is strong enough for the given tasks, and people who deal with fatigue and exhaustion will want a lower energy pup that does not demand a lot of exercise (1). You may also want to consider how any limitation you may experience due to your condition(s) may impact your training experiences. One owner-trainer reports that she felt equipped to train her own dog because she had extensive experience training dogs in the past and she worked part-time giving her time to commit to the pup. Specifically, she wanted to train her dog to be alert to sights and sounds to assist with her vision and hearing impairments. However, she struggled to teach the dog to react to sights and sounds because she could not always recognize them herself (2). If you have specific limitations that may impact your training experience, it does not mean that you can't train your own dog. It just means you may have to get creative in the way you train, or enlist outside help. 3. Start with basic training. Some of you may have already done significant basic training with your pups. Even still, it is important you spend time reinforcing the skills your dog has previously learned to ensure they consistently understand basic commands such as sit, stay, come, down, and heel. These types of commands are foundational for learning more complicated assistance tasks (1). You should also ensure your dog is house trained and can eliminate on command (5). This is especially important for service work because you may be in places throughout your days where your dog only has a few opportunities for elimination. Clicker training can be one way to help dogs learn basic commands. The trainer presses the clicker when the dog completes a task, which is accompanied by praise, treats, or a toy. This is called operant conditioning and the dog begins to see it as a game while they work toward reward. Once the dog learns the commands well, some experts suggest randomizing the rewards so that the dog learns to perform the tasks consistently, not only when a reward is given (1). 4. Socialize your pup. The level of socialization your pup requires may depend on the work you have already done with them. A basic training class is not only a great way to learn or reinforce foundational skills, but it can also be an opportunity to expose your pup to other dogs and humans while simultaneously focusing on specific tasks. Even if your dog is used to being around people and other animals, it is important that they can stay calm and on task in unfamiliar surroundings. The AKC Canine Good Citizens Program is a great training model to help your dog be well-socialized for service work (5). 5. Train your dog in service tasks. Service task training will depend heavily on the basic training you do with your dog. You will want to consider what type of basic commands could support your individual needs. For example, one owner-trainer reports that the basic commands of take, hold, and give were foundational in training her pup to retrieve items, open and close doors, assist with get dressed, and help with laundry. She advises thinking about the words you choose carefully and remaining consistent throughout training. Some experts believe dogs are prepared for service training between 1.5 and 3 years old. Their puppy years can be used to solidify basic commands and work on socialization (1). 6. Take a Public Access Test. Nearly all reputable service dog training organizations only certify service dogs when they pass a Public Access Test. While service dogs are not required to take a test by the ADA, it is a responsible way to ensure you and your dog can safely work together in public. The Assistance Dogs International (ADI) test can be found here. Resources Article Citations Furlong, R. (2006, December 1). Training your own service dog. New Mobility - Life Beyond Wheels. https://www.newmobility.com/2006/12/training-your-own-service-dog/ Reyenga, S. (2018, September 12). When I tried to train my own service dog. The Mighty. https://themighty.com/2018/09/train-my-own-service-dog-problems/ Froling, J. (1998). Finding a suitable candidate for assistance dog work. International Association of Assistance Dog Partners (IAADP). https://www.iaadp.org/temperament.html Train your own service dog. (2020). The Dog Alliance. https://www.thedogalliance.org/training-your-own-service-dog Karetnick, J. (2019, September 24). Service dogs 101: Everything you need to know. The American Kennel Club (AKC). https://www.akc.org/expert-advice/training/service-dog-training-101/ Additional Resources American Kennel Club Canine Good Citizens Program. https://www.akc.org/products-services/training-programs/canine-good-citizen/ Assistance Dog International. https://assistancedogsinternational.org/ Dog Owner. https://www.dogowner.co.uk/ Lean on Me - The Remarkable Story of a Young Woman with POTS and the Dog that Keeps her Safe. https://www.dinet.org/member-stories/lean-on-me-–-the-remarkable-story-of-a-young-woman-with-pots-and-the-dog-that-keeps-her-safe-r208/ Service Dogs for POTS Facebook Group. https://www.facebook.com/groups/ServiceDogsforPOTS/ NOTE: this article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of the group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:d45063b1-4274-4530-99e8-f1a2db5d7ab1
  9. by Chelsea Goldstein, Dysautonomia Information Network If you've had to adjust to life with chronic illness, you've probably experienced stressors that people without health concerns don't even think about. Day-to-day tasks can seem insurmountable when you tackle them with pain, extreme fatigue, brain fog, and even syncope. Medical appointments can be stressful, especially if doctors don't have strong understandings of your condition(s). It can be exhausting to feel like you have to explain your condition(s) to everyone around you. Even then, they still may not understand (1). This article is meant to provide a few tips on how you might manage some of those stressors in your everyday life. These tips are not meant to be a substitute for professional medical advice, and any changes in lifestyle and routine that may impact your health should be discussed with your doctors. If you feel like you may be living with an anxiety condition, you should reach out to a mental health professional for support. Our article, I Can't Just Relax: Understanding Anxiety and Chronic Illness, may also be a helpful resource. If you or a loved one is experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Symptoms of Stress As mentioned in many of our articles, dysautonomia is NOT caused by stress or anxiety, but it is common to experience stress as a result of navigating daily life with dysautonomia. One of the most common issues we hear from our members is that doctors mistake dysautonomia symptoms for stress or anxiety during their diagnostic processes, which can lead to complex feelings surrounding stress and anxiety. If we admit we are struggling with adjusting to life with dysautonomia, will doctors dismiss our dysautonomia diagnosis? How do I know if what I am feeling is caused by stress or dysautonomia? First, there is absolutely no shame in feeling stressed as you navigate day-to-day life with chronic illness. It's tough, and it is normal to feel overwhelmed in these circumstances. It can also be difficult to discern the source of your symptoms, since the physical symptoms of stress and dysautonomia can present similarly, including headaches, muscle tension, chest pain, fatigue, digestive issues, and sleep difficulties. If you are having a hard time figuring out if you are experiencing stress/anxiety, taking a closer look at your emotions and behaviors may be helpful. Feeling restless, having a lack of motivation, feeling overwhelmed, outbursts of irritability and anger, pervading feelings of sadness, overeating or under-eating, drug or alcohol misuse, and social withdrawal may all be symptoms of stress (2). Tracking your daily physical symptoms, emotions, and even triggering events can be one way to better understand the sources of your symptoms. You can do this using a small notebook that you carry with you throughout the day. It may be helpful to use a rating scale (e.g., 1-5) to rate the severity of your top five to ten symptoms each day. You should also record a little bit about your overall emotional experiences that day, as well as major activities. For example, how many hours of sleep did you get the night before? How active were you? What was your nutrition like that day? Over time, you will start to see patterns emerge - certain symptoms may get worse when you feel stressed or sad, or getting too little sleep may trigger your body to react in specific ways. Whatever you discover, it will be invaluable to have this data about your own body to better understand how to manage your condition(s) and any stress that may arise from living with them. There are also several apps that help you track symptoms. Flaredown is a free tracking app designed for chronic illness, and Tally and Symple are both free trackers with the options of paid upgrades. CareClinic embeds medication reminders and is $9.99 per month (3). You may want to explore a few options to find one that can be customized to your specific needs. Understanding Stress If you've been able to identify that health-related stress is impacting your life, it may be helpful to dive deeper into the specific experiences or circumstances that are the most stress inducing. Cognitive Behavioral Therapy (CBT) is a type of talk therapy conducted with a mental health professional who helps you process challenging situations in clear ways, so that you feel more in control of your specific stressors. Each therapist and client will approach CBT a little bit differently, but here a few general steps you might expect: Identify the stressful situation. Sometimes we have difficulty articulating what, exactly, is stressing us out when we are overwhelmed, so the first step of CBT is to identify the specific stressful triggers in our lives. If there are multiple stressors in your life, you and your therapist may spend some time pinpointing the ones that you want to prioritize (4). Cultivate awareness. A therapist will work with you to help you become aware of your thoughts, emotions, and beliefs about the these specific stressors. It may be helpful to keep a journal during this phase (4). For example, you may believe that everyone is annoyed when you cancel plans last minute to manage your illness. This may lead you feel guilt and frustration, and may make you think that none of your loved ones understand the severity of your situation. Identify negative/inaccurate thinking. Your therapist may ask you to focus on your reactions to your stressors, including physical, emotional, and behavioral reactions. Perhaps, you feel left out when you see your friends post pictures of the activity that you had to drop out of last minute. This may be followed by anger if your friends don't check-in with you, or you feel like they are starting to invite you to less outings. You may react by limiting contact with your friends. These are just a few examples of understandable reactions to this situation. They may, however, also be unhelpful in some cases. For example, some of your friends may want to spend time with you, but are hesitant to invite you to activities because they don't want you to feel bad if you can't go. Maybe they do get frustrated when you cancel plans because they don't understand your condition well, but they would be open to learning about it and would likely have more empathy if they had a deeper understanding as to why you regularly cancel plans. This phase will help you identify thought patterns that may be making you experience the situation in a more negative light than necessary. Reshape inaccurate thought patterns. It can be difficult to identify what parts of our reality are coming from fact, and what parts are coming from inaccurate, ingrained thought patterns. A therapist will help you work through this step (4). You may even be able to use the knowledge you learn to direct the situation, in some cases. For example, you could arrange an activity you know you could do with your friends, like watch a movie at your house, and use it as an opportunity to tell your friends you still want to be included in outings even if you have to cancel last minute. It generally takes five to twenty sessions with a therapist to complete CBT for specific stressors. CBT is just one stress management technique, and you should work with a mental health professional to decide what is best for you. Processing Feelings Frustration, overwhelm, and guilt are major sources of health-related stress. A variety of strategies, including CBT, can help us process these emotions. Frustration & Feeling Overwhelmed CBT is a great strategy for processing frustration and feeling overwhelmed by your health condition(s). Here are a few more strategies that may help: Make a list of the specific things in your life that trigger frustration or feeling overwhelmed. What can you take action on? Focus on only one or two items on your list at a time. For example, one person was worried about losing her job because her health caused her to fall behind on deadlines. She focused on that stressor and decided to talk to her doctor about her energy levels, research disability benefits, and search for jobs that were appropriate for her current health (5). Our work and disability articles may also provide some guidance. Journal your feelings in a less structured way. Sometimes, just getting our feelings onto paper can be therapeutic. Free writing is a great strategy: set a timer for a few minutes and the only rule is you must keep writing. This helps you express your genuine thoughts and feelings because you aren't able to overthink how and what you will write down. Schedules and systems can be effective tools to help you mitigate the stress of managing multiple medical appointments, or accomplishing day-to-day activities with limited energy and plenty of brain fog (5). Many years ago, I sat next to a woman on a plane who told me the secret to limiting stress was building margin into my day. It was a simple statement, but made me think about my habit to pack far more than is humanly possible in 24 hours, especially with chronic illness. From that moment, I started block scheduling, or scheduling chunks of time when I would only focus on one task or set of tasks. I have listened to that stranger's advice by always adding at least 30 extra minutes to however long I think a task will take me. It has helped with my brain fog because I only focus on the task at hand. It also encourages me to keep up with my daily self-care, like meditation and light exercise, because they're pre-scheduled. Finally, I break down my overwhelming to-do list to fit within the blocks (e.g., I usually prioritize one major task and one to two small tasks during my morning work block each day). You can learn more about the details of block scheduling from this awesome blog. Even though it may seem illogical for someone to feel responsible for something they can't control, many people with chronic illness feel guilty about how their health impacts people around them (6). A major step in processing that guilt is understanding where it comes from: Being a financial burden is a common worry among people with chronic illness. How will my family cope if I can't work and we lose my income? How will we pay my medical bills? It is easy to ruminate on how much better your finances may be if only you weren't so sick (6). Sometimes, we also worry about being a physical burden. Needing help with tasks like bathing, walking, and driving, can put extra strain on both you and family members. It can also be emotionally taxing to need/provide help in such intimate ways (6). We may also feel like we are the "high-maintenance" friend or family member. This may be a particular source of guilt if you have a lot of dietary restrictions that impact where, when, and what you can eat. Our loved ones may have made comments or jokes about our needs when out and about that put us in positions of feeling like we have to compromise our health to avoid such commentary, or risk getting negative feedback when we vocalize our needs (6). Nearly everyone I know living with chronic illness has felt guilty about their health at one point or another. Once we understand where it is coming from, what can we do about it? Similar to CBT, it can be helpful to practice separating the reality of the situation from the unhelpful thought patterns we may have around the situation. For example, is it realistic to believe that you could magically hold a full-time job if you haven't been able to work for months? Probably not. Therefore, thoughts about you being useless unless you can work to support yourself are unhelpful and untrue (6). Once you recognize these unhelpful thought patterns, it can make you feel more in control by shifting focus to the positives - what you can still do. A gratitude journal is one way to intentionally focus on the good in your life (6). We discuss several other self-care strategies below that may be helpful, too. A shift in perspective can help us view ourselves through the eyes of our loved ones. If roles were reversed would we feel like our loved one was a burden? We may feel stressed about the situation, but we would most likely want our loved one to be as comfortable, happy, and healthy as possible. This can help us believe them when they tell us we are not burdens in their lives (6). At Home Self-Care There are many aspects of our lives we can't control when we live with chronic illness. Self-care may seem trivial, but it can be one way to reserve a small moment of your day to prioritize your mental, emotional, spiritual, and physical health. Self-care can be a tough concept. Meditation, sleep, journaling, nutrition, exercise, hobbies, connection, and laughter can seem trivial when we are dealing with endless symptoms, financial troubles, or other major issues that accompany chronic illness. However, the value of self-care may lie in the fact that it forces us to say "no" even for just a few minutes. We have a moment to say no to the worry that may plague our thoughts all day long, its a tool to say no to activities that we know are harmful to our health, maybe it's just saying no to cooking dinner or attending a volunteer activity when we really just need a break. Sometimes, we need to say no to ensure we are preserving what mental, spiritual, and physical health we can. Mindfulness and meditation are a couple of strategies to help us actively say "no" to ruminating thought patterns that can cause stress. Mindfulness is the act of focusing on a task at hand to slow down the stressful thoughts that can activate the sympathetic nervous system, which in turn can worsen many dysautonomia symptoms. For example, if you are driving to a stressful medical appointment, mindfulness encourages you to be hyper focused on the present act of driving so you do not get consumed with stress and worry about the upcoming appointment. Thinking about stressful situations is normal but when we begin to ruminate on them for a long time they usually become more harmful than helpful. Mindfulness is a tool to help us escape that mental merry-go-round (6). Similar to mindfulness, meditation is a way to disrupt stress-induced thought patterns and refocus attention on the present to produce feelings of calm. There are countless types of meditation including guided, transcendental, deep breathing, chakra, etc. It may take some time to discover a type that works for you, but try not to get too caught up on the stereotypical image of a cross-legged, straight-backed, chanting yogi. That structure probably won't work for many people with chronic illness. I enjoy guided meditation to keep me focused, and I always lay flat on my back with my eyes closed and my body relaxed. I also meditate for no more than 10 minutes a day. This is the style that is sustainable for me and my body. What works for you may be different. If you are new to mindfulness and meditation, these resources may help you get started: The book, Mindfulness to Go: How to Meditate When You Are On the Move, is a good resource for people who can't commit to a block of time to meditate each day, but want to infuse some mindfulness practices into their existing routine. The Headspace app is a great tool for those who want to build a regular meditation practice into their day. Their short meditations are designed for beginners, you can track your progress in the app, and you can even pair with another user for accountability. The Calm app is another popular meditation resource. It provides guided meditations, breathing exercises, and even sleep stories (1). Strong sleep hygiene is another invaluable self-care tool for many people living with chronic illness. Sleep hygiene is a strange term and, no, it does not refer to bathing before bed. It is used to describe the habits and routines that we have around sleep to encourage the most restful experience possible. If you are someone who struggles to fall asleep or stay asleep (hello, me too!), and sleep aids give you nasty side effects like brain fog, then cultivating strong sleep hygiene habits may be beneficial to you. Before building stronger sleep habits, it is important to assess your current sleep to gain a complete understanding of what may trigger your restlessness. Track the following things each day for two weeks (1): Caffeine intake Alcohol consumption Computer/phone screen time Time you went to bed Hours of Sleep Wake-up time Number of times you woke up in the night and why Your smartphone can be a helpful resource to track daily screen time, and how often you wake throughout the night (1). After two weeks, assess this data. Do any patterns emerge? For example, I found that it always takes me several hours to fall asleep if I drink coffee in the afternoon. I switched to drinking coffee only when I wake up, and drink tea later in the day if I need a pick-me-up. Depending on your specific sleep patterns, some of these sleep hygiene tips may encourage more restful sleep (1): Limit your caffeine intake, especially after 2 pm Engage in light exercise each day, but avoid exercise four hours before bed Use blue light filters on your electronics, or blue light filtering glasses Establish a bedtime routine around the same time each night (e.g., drink a cup of herbal tea and read). Over time, your body will be triggered to prepare for sleep when you engage in your routine Ensure your sleep space is dark and cool (This may be especially important if you deal with temperature regulation issues!) Set your phone on Do Not Disturb at a specific hour each night, and ensure it is face down so the light does not disrupt you Do not lie in bed trying to fall sleep for more than 20 minutes. If you can't fall asleep, get out of bed and engage in a non-stimulating activity (e.g., read a calming book, or do a repetitive task like knitting or coloring) Try to wake up around the same time everyday Good sleep is often overlooked, yet so many of us with dysautonomia struggle with falling and staying asleep. These habits don't guarantee perfect sleep every night, but practicing them regularly will likely improve your overall sleep hygiene. For me, I have found that getting good sleep can do wonders to improve nearly all of my other symptoms. I've learned to make my sleep routines some of the most important parts of my day. We could write an entire book (and then some) on self-care techniques. Many of them fall within the categories of nutrition and exercise, but we won't discuss those here. Instead, we encourage you to check out our articles specifically regarding these topics on DINET.org. A final type of self-care we think is important to mention is connection, both with yourself and others. Connection with Yourself One way to connect with the "true you" is to make time for your hobbies. If you don't feel like you have any hobbies, a good question to ask yourself is, "What made me light up when I was a kid?" Pursuing hobbies to minimize stress can seem like a cliché suggestion, but research demonstrates that engaging in hobbies is associated with significant, positive effects on our health, such as lower cortisol levels, decreased waist circumference, and perceptions of better physical function. Hobbies are also associated with better psychological states (7). Why? Perhaps because hobbies cultivate eustress, or healthy stress that is defined as stimulating enough to help us feel excited about, and engaged in, life, but is not too overwhelming. A hobby can be particularly beneficial if you feel a bit stuck, which can occur when we are home bound for periods of time due to our health needs (7). A sense of humor has also been shown to significantly decrease stress (2). Sometimes we can even find humor in the very things that stress us out! Connection with Others Humor is a great way to minimize stress on your own, but it can also be therapeutic when shared. Many people who live with chronic illness share a particular type of humor - raise your hand if you've ever laughed with a fellow chronic warrior about the absurd situations you have been in due to your health needs! A shared sense of humor is just one example of the benefit of connecting with other people who also have chronic illness. I have made a number of friends over the years in hospitals, on social media, and through DINET. I have never even met many of them face-to-face, but they have been invaluable, trusted friends who I couldn't imagine my life without! It is also important to foster connections with your loved ones who don't live with chronic illnesses, but these relationships can be challenging if you do not feel like they understand your situation. One way to appreciate these relationships, even if there isn't full understanding, is to identify the strengths of each one. For example, you may have a funny friend who is always up for making you laugh through a struggle, and you may find that another friend is a fantastic listener. Perhaps you gravitate toward each of these friends in different situations, and that is okay. If you are struggling to identify trusted relationships in your life, you can review this list of qualities to look for in healthy, trusting relationships. Who in your life embodies these qualities? Write their names down, and what you love about each of them. Keep this list close. Also remember to think about what you can give in these coveted relationships because you certainly have a lot to offer, too! Resources Article Citations Living with Dysautonomia. (2018, May 16). Cleveland Clinic. https://my.clevelandclinic.org/health/articles/17851-living-with-dysautonomia Stress Management. (2019, April 4). Mayo Clinic. https://www.mayoclinic.org/healthy-lifestyle/stress-management/in-depth/stress-symptoms/art-20050987 Menchaca, D. (2020, February 20). 5 Symptom Diary & Health Journal App. Teamscope. https://www.teamscopeapp.com/blog/5-diary-apps-for-tracking-symptoms Cognitive Behavioral Therapy. (2019, March 16). Mayo Clinic. https://www.mayoclinic.org/tests-procedures/cognitive-behavioral-therapy/about/pac-20384610 Marina (2020, January 20). The Discerning You. https://thediscerningyou.com/how-to-cope-when-you-feel-overwhelmed-by-your-chronic-illness/ Keys, A. (2019, June 4). Surviving the Guilt that Comes with Chronic Illness. Dysautonomia Information Network. https://www.dinet.org/info/newsletters/surviving-the-guilt-that-comes-with-chronic-illness-r221/ Scott, E. (2019, September 30). The Importance of Hobbies for Stress Relief. Very Well Mind. https://www.verywellmind.com/the-importance-of-hobbies-for-stress-relief-3144574 Additional Resources DINET Forum https://www.dinet.org/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness Increase Your Productivity with Block Scheduling by the Work at Home Woman. https://www.theworkathomewoman.com/block-scheduling/ Mindfulness to Go. https://www.davidharp.com/ Headspace. https://www.headspace.com/ Calm. https://www.calm.com/ MentalHealth.gov. https://www.mentalhealth.gov/talk/people-mental-health-problems NOTE: This article is available in pdf format below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, the name of the group and the number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:76fbe912-1358-4ca1-b909-fcec4470e42a
  10. by Chelsea Goldstein, Dysautonomia Information Network Anxiety, similar to dysautonomia, is clouded by stigma and misunderstanding. You may have encountered the female hysteria stereotype at some point, and you may have even experienced judgement due to this label or others like it. Unfortunately, many people with misunderstood health conditions, such as dysautonomia, are hesitant to openly discuss anxiety because our symptoms are so often dismissed as "all in our head" and we are told we can solve them if we "just relax". Even more, many medical professionals don't understand how to properly test for dysautonomia so their diagnostics often demonstrate normal results, which further confirms their suspicions of us "just being anxious" people. This can create a confusing and vicious cycle for patients. It is important to note that dysautonomia is NOT caused by anxiety (1), but that anxiety can certainly arise from dealing with the stress of the condition and the misunderstanding that surrounds it. It is also possible for people to have both anxiety AND dysautonomia, and each condition deserves understanding, respect, and proper treatment. Types of Anxiety Occasional anxiety during stressful situations is expected. An anxiety condition is when anxiety is persistent, and it may grow worse over time. It could also interfere with daily activity, such as work, self-care, and relationships (2). 1. Generalized anxiety disorder (GAD): Generalized anxiety disorder is characterized by feeling "excessive anxiety or worry, most days for at least six months." (2). Feelings of anxiety can arise around anything, such as work or school situations, close relationships, social settings, health concerns, and even routine tasks. This can cause significant disruptions to one's life. Symptoms may include (2): Feeling restless/on-edge Fatigue Difficulty concentrating Irritability Muscle tension Sleep difficulties 2. Panic disorder: Panic disorder involves panic attacks, or periods of intense fear, that come on suddenly and peak within minutes. Some panic attacks are triggered by a feared situation, such as heights, while others can occur unexpectedly. Many people try to control panic attacks by avoiding places, situations, or objects that may trigger them. This may have an adverse effect by creating fear of panic attacks themselves. Some symptoms of panic attacks are (2): Heart palpitations Sweating Trembling/shaking Shortness of breath Feeling impending doom 3. Phobia: While it is expected to feel fearful in certain situations, a phobia is when the feelings of fear around an object or situation are far greater than the actual danger posed in those instances (2). Some common phobias include heights, certain animals or insects, tight spaces, and being alone (3). People with phobias may feel (2): Excessive worry about triggering situations Avoidance of fear-inducing situations Immediate and intense anxiety when encountering situations 4. Separation Anxiety: We generally discuss separation anxiety in children, but it can also occur in adults. It is characterized by a fear of being apart from people to whom they are attached. They may worry about their people being harmed when they are separated, have nightmares about being apart, and even experience physical symptoms during separation. This can lead them to avoid separation from their attachment figures (2). These are a few of the more common types of anxiety, but like many conditions, they are not clear-cut categories. It is always important to discuss your individual symptoms with a professional to get an appropriate diagnosis and support. Anxiety and Chronic Illness Symptoms of anxiety, similar to depression, can be confused with symptoms of chronic illness, especially dysautonomia. Check out our article You're Not Alone: Understanding Depression and Chronic Illness to learn more about depression. Symptoms of anxiety and dysautonomia can be so strikingly similar that many doctors misdiagnose dysautonomia patients with anxiety because they do not understand the subtle differences between the two. Even people living with dysautonomia and anxiety may have a difficult time understanding the cause of their own symptoms on a day to day basis. One reason for the confusion is the way that dysautonomia, particularly POTS, is related to dysfunction of the autonomic nervous system (ANS). The sympathetic nervous system (SNS) is the part of the ANS responsible for our fight or flight response or, medically speaking, the release of norepinephrine. Generally, our bodies release norepinephrine in response to stressful situations. However, in POTS, this response can activate without a triggering event, which causes anxiety-like symptoms in the body (4). These symptoms of dysautonomia, such as tachycardia, chest pain, or near-fainting can, understandably, induce fear and worry further entangling dysautonomia and anxiety. It is normal for these symptoms to trigger stress, especially if they dramatically interfere with your ability to engage in everyday life. However, many of us can tell stories, especially during our diagnostic processes, of medical professionals who told us our symptoms are “all in our head” and our cure was to "just relax". We could feel dramatic physical changes in our bodies, as if our hearts were about to pound out of our chests. But, we were often dismissed as being dramatic after our doctors assessed our symptoms, heard the concern in our voices (justifiably so!), and viewed a few "normal" test results. This type of invalidation is stress-inducing. Such dismissals are not only problematic because they deny us understanding and treatment for our dysautonomia, but they also perpetuate shame around anxiety by insinuating mental health conditions that are “all in our heads” deserve less understanding, acknowledgement, and treatment than conditions that may be “all in the body.” While many, if not most, of us have had eerily similar experiences, it is also important to remember the relief and validation we felt when we did find the amazing physicians who believed our symptoms and guided us toward proper diagnoses. While dysautonomia is NOT caused by anxiety, it is common to experience anxiety and physical conditions at the same time. Chronic illness and anxiety can create a feedback loop: we may feel anxiety when our physical symptoms are disbelieved or dismissed by professionals and loved ones, especially if they are invisible. In turn, this stress can perpetuate our physical symptoms (5). It can also be difficult to manage symptoms of multiple conditions. One technique is to keep a medical journal to document how you feel (physically and mentally) when your symptoms arise, what you are doing, and any other circumstances. Management Options These are a few general management options. You should work with your medical professional to tailor a plan specific to your needs. 1. Medication: Several types of medication can be used to manage the symptoms of anxiety. Medication treatment should ALWAYS be guided by a doctor who should consider all of your health conditions. Benzodiazepines can be helpful for some people, but are also addictive, so short-term use may be considered. Anti-depressants may disrupt the chemical processes that trigger anxiety, but it may take time to find one that works for you. Beta-blockers can help manage the physical symptoms of anxiety, such as tachycardia. You should never start or stop taking any of these medications abruptly or without professional guidance, and you should always talk with your doctor about any side effects (2). Many people, however, may not need medication and prefer other avenues of management to avoid potentially harmful side effects (4). 2. Psychotherapy: Cognitive Behavioral Therapy is a common psychotherapy practice used to manage anxiety. It focuses on identifying the thought patterns that lead to anxiety, and then disrupting those thought patterns. Other forms of psychotherapy, such as exposure therapy may be helpful in some circumstances (2). 3. Support: It is always important to surround yourself with supportive environments where you feel you can discuss your mental health openly, either in-person or online. The DINET Forum is one space where you can virtually connect with other people living with dysautonomia to share difficulties and accomplishments, as well as provide support to fellow members. Often times helping someone else can positively impact your own mental health. 4. Lifestyle Changes: Some people find that lifestyle techniques such as deep breathing, pursuing purpose, developing preventive habits, and creating time to relax and laugh are helpful tools to manage the symptoms of anxiety. While lifestyle changes are often activities you can engage in on your own, you should always discuss them with professionals to ensure they are helpful to your anxiety and to determine if they should be supplemented with other forms of management. Just remember that it may take some time to figure out what works for you, and what works is often a combination of approaches that may change as your situation shifts over time. If you or a loved one are experiencing suicidal thoughts contact the National Suicide Prevention Hotline at 1-800-273-8255. Lifestyle Techniques Here are some ideas of lifestyle techniques that may help support positive mental health. 1. Breathe Deep: Apps like Breathe can help you practice deep breathing, which can minimize anxiety because you 1) focus on one task, and 2) re-oxygenate your body to prevent hyperventilation. There are multiple techniques for deep breathing, but they often involve breathing from your diaphragm (not your chest) and taking slow steady breaths. This technique can be used virtually anytime, anywhere, and it may be especially helpful when you feel intense bouts of anxiety about to arise (4). 2. Pursue Purpose: There are many ways to pursue purpose, but it is important that you find what works for you. Sharing your own experiences and providing a listening ear to others in similar circumstances in a support group can be one way to fulfill purpose. You may also find purpose in your work or family roles. You could even seek out a community organization or an activity group that connects over a common interest. Volunteering can be another way to gain purpose. If you are not able to get out of your home, there many opportunities for volunteering online, including with DINET. All of these activities provide a similar benefit of helping you focus on a loved and meaningful activity, which can disrupt anxious thought patterns (4). 3. Develop Preventive Habits: Preventive habits can include eating well-balanced nutritious meals, appropriate exercise, and strong sleep hygiene. Diet, exercise, and sleep are often difficult for people living with dysautonomia, anxiety, and other chronic conditions, so it may take some time and professional support to figure out the exact habits that work for you. Some people with anxiety find that minimizing excessive sugar and caffeine can help manage their symptoms (4). The type and intensity of exercise that works for you may vary depending on your overall health, but many people find that even light stretching, seated exercise, or a short walk can help with anxiety. To improve sleep, try to go to bed and wake up at the same time everyday. Limit distractions in your bedroom, and ensure it is cool and dark. Sometimes it may be beneficial to discuss your medications with your doctor to determine if they may be disrupting your sleep, or if taking them at a different time of day would be helpful (6). 4. Make Time for Relaxation and Laughter: Laughter and relaxation can be difficult if you live with anxiety, so intentionally scheduling time in your day to pursue them can help manage symptoms. Does a daily meditation practice help you feel more grounded? How do you feel when you call a friend who always makes you laugh (4)? Resources Article Citations Postural Orthostatic Tachycardia Syndrome (POTS). (2020). Johns Hopkins. https://www.hopkinsmedicine.org/health/conditions-and-diseases/postural-orthostatic-tachycardia-syndrome-pots Anxiety Disorders. (2020). National Institute of Mental Health. https://www.nimh.nih.gov/health/topics/anxiety-disorders/index.shtml Osborn, C.O. (2019 February 27). Common and Unique Fears Explained. Healthline. https://www.healthline.com/health/list-of-phobias MacDonald, H. (2020, February 20). Mental Health and Chronic Illness. Dysautonomia Information Network (DINET). https://www.dinet.org/info/newsletters/mental-health-and-chronic-illness-r232/ Bates, M. (2014, July 22). Silent Suffering: Anxiety and Chronic Disease. My Good Days. https://www.mygooddays.org/blog/silent-suffering-anxiety-chronic-disease/ Tips for Beating Anxiety to Get a Better Night's Sleep. (2020). Harvard Health Publishing. https://www.health.harvard.edu/mind-and-mood/tips-for-a-better-nights-sleep Additional Resources DINET Forum https://www.dinet.org/ DINET Volunteer Page https://www.dinet.org/get-involved/volunteer/ National Suicide Prevention Lifeline. https://suicidepreventionlifeline.org/ National Institute of Mental Health. https://www.nimh.nih.gov/health/publications/chronic-illness-mental-health/index.shtml Anxiety and Depression Association of America. https://adaa.org/learn-from-us/from-the-experts/blog-posts/consumer/living-chronic-illness NOTE: This article is available in pdf form below. Printed copies for support or community groups are available by request to webmaster@dinet.org Please include the purpose, name of group and number of copies requested. PDF link: https://documentcloud.adobe.com/link/track?uri=urn:aaid:scds:US:bacaa14c-1235-4419-be2c-faf5c90c6538
  11. DINET collects relevant research related to dysautonomia disorders and related conditions & illnesses. This is in no way meant to be a complete list of all research currently underway or the results of research currently made public. But it is a summary of key research studies that we hope are relevant and potentially important to our members' ongoing treatment and prognosis. Please check back as this page is regularly updated. Updated Info: Dr. Raj and associate, Dr. Miller's updated article about the pharmacotherapy for POTS. Pub. May 2018 in Science Direct, Autonomic Neuroscience. https://www.sciencedirect.com/science/article/pii/S1566070218300250 NEW: An examination of whether the impairment of the Corticol Autonomic Network (CAN) of the brain is involved int the psysiology of Neurogenic Orthostatic Hypotension (NOH) Pub. Oct 2018 https://www.ncbi.nlm.nih.gov/pubmed/30332348 NEW RESULTS: The need for specific diagnosis and treatment for patients labeled with CFS and Fibromyalgia. Important research results from one of DINET's Medical Advisors, Dr. Svetlana Blitshteyn and her colleague, Pradeep Chopra, Pub date Oct 2018 Read full article: 2018CFS_Fibromyalgia_ChronicPain_PubKarger.pdf Updated info from the CDC on HPV Vaccine safety for POTS patients https://www.cdc.gov/vaccinesafety/vaccines/hpv/hpv-safety-faqs.html Follow up to: HPV Vaccine and POTS - https://www.ncbi.nlm.nih.gov/pubmed/28689455 Complex Regional Pain Syndrome, Type 1 - Diagnosis and management. https://www.ncbi.nlm.nih.gov/pubmed/29409405?_ga=2.71311891.1204982470.1531704876-989465291.1526426607 Study results: A presentation made by the American Association for Cancer Research at their annual meeting reported findings related to health risks in post-menopausal women using medication for high blood pressure. The report claims an increased risk of pancreatic cancer in post-menopausal women using short-acting calcium channel blocking medications for their blood pressure treatment. Read the information from the AACR. Study results: NE Journal of Medicine releasing study results for episodic migraine treatment using Erenunab. The publication is reporting a 50% or greater reduction in the average number of migraine days per month. Read more about this study Study results: Physical maneuvers are viewed as important and promising strategies for reducing recurring episodes of syncope in vasovagal syncope patients. Read the result of the study published Jan. 2018 Study results: University of Alberta & McGill University release their findings for a new therapeutic agent that may hold the potential for the prevention of MS Article synopsis: https://bit.ly/2GhF5FK Research Article: https://insight.jci.org/articles/view/98410 Study results: Could gut bacteria be the key to preventing autoimmune disorders? Researchers from Yale, New Haven, CT are reporting that discovery that bacteria in the small intestine can travel to other organs and induce an autoimmune response. They also are reporting that antibiotic treatment or vaccine may be the key to combating this reaction. The study results were originally published in the journal Science. This article from Medical News Today gives a synopsis of the findings and links to the full study. https://www.medicalnewstoday.com/articles/321157.php Genomics and Health Impact Blog - a discussion about gene testing from the CDC There have been enormous contributions towards disease prevention in women's health, in particular, the development of consumer testing for the BRCA gene. The benefits cannot be applauded enough. However, health protection & research organizations like the CDC, are increasingly warning consumers about the need for professional counsel when interpreting results. This article, humorously entitled "Think before you spit" tempers the amazing breakthroughs with the cautionary information we need to have to be able to put a perspective on the results testing may give us. https://blogs.cdc.gov/genomics/2017/04/18/direct-to-consumer-2/ 1st lab test to detect concussion approved by FDA For any person who has fainted or fallen and hit their head, the blood test approved recently by the FDA could be a lifesaver. The test detects concussion by looking for specific proteins released into the blood within 12 hours after the head trauma. Known as the Banyan Brain Trauma Indicator it can reduce the need for CT Scans and radiation and will produce results within 3 - 4 hours following injury. Read more about this important breakthrough Neuroprotective diet having good results for people living with MSA https://www.multiplesystematrophy.org/about-msa/neuroprotective-diet POTS & Ehlers-Danlos Syndrome "Postural tachycardia in hypermobile Ehlers-Danlos syndrome: A distinct subtype?" by Miglis MG, Schultz B, and Muppidi S, from the Departments of Neurology and Psychiatry at Stanford University Medical Center. "It is not clear if patients with postural tachycardia syndrome (POTS) and Ehlers-Danlos syndrome (hEDS) differ from patients with POTS due to other etiologies. We compared the results of autonomic testing and healthcare utilization in POTS patients with and without hEDS." https://www.ncbi.nlm.nih.gov/pubmed/28986003
  12. Dysautonomia commonly develops as a complication of a primary illness or is seen in patients with multiple disorders. These scenarios add a layer of complexity to a patient’s diagnostic journey, as well as their treatment plan. When one of those illnesses is an eating disorder, the complexities can be significantly magnified. Eating disorders, which include bulimia nervosa and anorexia nervosa, are defined in the Diagnostic and Statistical Manual of Mental Disorders (DSM) as follows: "Feeding and eating disorders are characterized by a persistent disturbance of eating or eating-related behavior that results in the altered consumption or absorption of food and that significantly impairs physical health or psychosocial functioning." The lifetime prevalence estimates for bulimia nervosa and anorexia nervosa in US adults are 1.0% and 0.6%, respectively. [1] Members of the dysautonomia community are most likely some of the people additionally affected by these severe conditions. In wading through the medical literature on eating disorders and dysautonomia, several parallels emerged. These parallels can be seen in the demographics of the patient population, as well as in the symptoms both disorders can demonstrate. For instance, both anorexia nervosa [1] and Postural Orthostatic Tachycardia Syndrome (POTS), a form of dysautonomia, are more commonly observed in women and adolescent girls. [2]. Also, anxiety and depression are common in both dysautonomia [3] and eating disorder patients. [1] Further, POTS and other forms of orthostatic intolerance can cause gastrointestinal symptoms, such as nausea and vomiting and severe POTS may interfere with eating. [4] [5] A POTS patient and an eating disorder patient may both have disrupted eating patterns, but the underlying causes and appropriate treatments are very different. Although I did not find specific evidence in the literature of such symptoms misattributed to eating disorders, it is not uncommon for a misdiagnosis of anxiety or other psychiatric illness attributed to POTS. [5] There is also evidence that eating disorders, particularly anorexia nervosa, may cause changes in cardiac function, structure, and rhythm. [6] Children with anorexia and bulimia may exhibit abnormally low blood pressure, slowed heart rates, and high heart rate variability. [7] In the abstract to a 2014 article in Clinical Autonomic Research, Takimoto, et al. reported autonomic abnormalities during tilt-table testing in study participants with anorexia nervosa. [8] Similarly, POTS and other forms of dysautonomia, display hallmark symptoms of high heart rates, abnormal rhythms, and erratic blood pressures. [13] And the irregular response of the autonomic nervous system during the tilt table test is one of the most recognized diagnostic criteria used to confirm a POTS diagnosis. There are conflicting views in the literature about the extent to which cardiac complications explain the fatality rates in anorexia and bulimia and whether such changes are reversible. [7] [9] Further research into these questions is needed, but what is certain is that eating disorders can be dangerous and require serious attention. While most forms of dysautonomia are chronic illnesses, they are not considered life-threatening on their own; rather, they are seriously life-altering and oft-times debilitating. Dysautonomia also requires serious attention and treatment. Stewart writes that it is essential to distinguish between eating disorders and POTS, noting that anorexia nervosa can cause “POTS-like” orthostatic intolerance in its early stages and young women referred for treatment for POTS symptoms may be underweight.[8] The similarities in patient demographics and overlap in symptoms between eating disorders and POTS have the potential to complicate the diagnostic picture further. Patients can have both conditions, of course, which may present additional diagnostic and treatment challenges. An untreated eating disorder might worsen pre-existing orthostatic intolerance. Since poorly managed orthostatic intolerance can cause limitations in many areas of life, such conditions, if unrecognized, could conceivably pose an additional challenge for eating disorder patients in achieving specific functional goals as part of treatment. There remains much to learn about both eating disorders and dysautonomia. Both can have a profound and long-lasting impact on a person’s life and health at an important point in that person’s development. Accurate diagnosis and appropriate treatment are vital. It is important to note that although the focus of this article was on anorexia, bulimia and largely POTS, there are many other eating disorders and dysautonomias. Further, these conditions can occur in people of any gender and at any stage of life. If you or someone you know is dealing with an eating disorder or dysautonomia, please consult a qualified medical professional without delay. Bibliography [1] National Institute of Mental Health, "Health Information: Statistics," November 2017. [Online]. Available: https://www.nimh.nih.gov/health/statistics/eating-disorders.shtml#part_155058. [2] R. Freeman, W. Wieling, F. B. Axelrod, D. G. Benditt, E. Benarroch, I. Biaggioni, W. P. Cheshire, T. Chelimsky, P. Cortelli, C. H. Gibbons, D. S. Goldstein, R. Hainsworth, M. J. Hilz, G. Jacob, H. Kaufmann, J. Jordan, L. A. Lipsitz, B. D. Levine, P. A. Low, C. Mathias, S. R. Raj, D. Robertson, P. Sandroni, I. Schatz, R. Schondorff, J. M. Stewart and J. G. van Dijk, "Consensus statement on the definition of orthostatic hypotension, neurally mediated syncope and the postural tachycardia syndrome," Clinical Autonomic Research, no. 12, pp. 69-72, April 2011. [3] J. N. Johnson, K. J. Mack, N. L. Kuntz, C. K. Brands, C. J. Porter and P. R. Fischer, "Postural Orthostatic Tachycardia Syndrome: A Clinical Review," Pediatric Neurology, vol. 42, no. 2, pp. 77-85, February 2010. [4] S. D. Sullivan, J. Hanauer, P. C. Rowe, D. F. Barron, A. Darbari and M. Oliva-Hemker, "Gastrointestinal Symptoms Associated with Orthostatic Intolerance," Journal of Pediatric Gastroenterology and Nutrition, no. 40, pp. 425-428, April 2005. [5] B. P. Grubb, "Postural Tachycardia Syndrome," Circulation, vol. 117, no. 21, pp. 2814-2817, May 2008. [6] M. A. Spaulding-Barclay, J. Stern and P. S. Mehler, "Cardiac changes in anorexia nervosa," Cardiology in the Young, 2016. [7] J.-A. Palma, L. Norcliffe-Kaufmann, C. Fuente-Mora, L. Percival, C. L. Spalink and H. Kaufmann, "Disorders of the Autonomic Nervous System: Autonomic Dysfunction in Pediatric Practice," in Swaiman's Pediatric Neurology, 6th Edition ed., Elsevier, 2017, pp. 1173-1183. [8] J. M. Stewart, "Common Syndromes of Orthostatic Intolerance," Pediatrics, vol. 131, no. 5, pp. 968-980, May 2013. [9] NINDS, "Postural Tachycardia Syndrome Information Page," 18 June 2018. [Online]. Available: https://www.ninds.nih.gov/Disorders/All-Disorders/Postural-Tachycardia-Syndrome-Information-Page. [10] Y. Takimoto, K. Yoshiuchi, T. Ishizawa, Y. Yamamoto and A. Akabayashi, "Autonomic dysfunction responses to head-up tilt in anorexia nervosa [Abstract]," Clinical Autonomic Research, vol. 24, no. 4, pp. 175-181, August 2014. [11] K. V. Sachs, B. Harnke, P. S. Mehler and M. J. Krantz, "Cardiovascular complications of anorexia nervosa: A systematic review," International Journal of Eating Disorders, vol. 49, no. 3, pp. 238-248, December 2015. [12] American Psychiatric Association, "Feeding and Eating Disorders," in Diagnostic and Statistical Manual of Mental Disorders, 5th Edition ed., https://doi.org/10.1176/appi.books.9780890425596.dsm10, 2013. [13] Grubb, B.P. & Karas, B. (1999) Clinical disorders of the autonomic nervous system associated with orthostatic intolerance. "Pacing and Clinical Electrophysiology" 22, 798-810 Return to Table of Contents
  13. I thought I was there, that I had reached the calm point where knowledge and experience were making it easier to handle the endless symptoms that go on 24/7/365. Life goes on, and I had to learn to manage it; water, electrolytes, healthy food, exercise, medicine, self-education, and introspection all combined to help get me to where I am physically and emotionally stronger though attacks. My EP, with a wink in his eye, calls them my neuro-cardio-vaso-vagaly-things. We both then smile because I don’t collapse so much anymore. I began telling myself that I was content. That an ideology of ‘what can I do’ was okay and would quickly replace ‘this is what we’re doing today, and then we can do this tonight and that tomorrow.’ I had already accepted that I could not do most of my old work, and I cut down to what I can manage. The amount of energy or non-foggy thoughts you can crank out does affect your life. But I am lying to myself when I say I’d be doing less in my 60s anyway--didn’t I read that 60 is supposed to be the new 40? If I found acceptance, why am I not enjoying myself? I walk the dogs late at night and speak to the heavens asking them the hows, ways, and means of my life. The answers come through natural shows of clouds parting before a full moon, with so many geese flying across the sky I could feel their wingbeats, the sounds of mockingbirds singing at midnight, the sound of the wind whispering through the trees; I even have been graced with shooting stars. And in all of that, there is no answer for me but to acknowledge that the world is still beautiful after dark. I tried going down to the beach and screaming at the ocean. It does nothing except give you a sore throat and cuts on your feet from the clam shells. I might as well pound sand. Acceptance wasn’t working for me. It’s been something nice to tell doctors and friends who want to hear anything about getting better. I think it makes it easier for them, as most people don’t understand much about dysautonomia, they only know it is bad and want you to get better. And, when you run into them at the store, you smile and say, ‘Oh, I’m doing a lot better.’ But then you’re nearly fainting at the register five minutes later and holding onto the cart handle for support; they don’t see you get through it, go home, and crash on the couch before you can empty your bags. This is unacceptable to me. I want my energy and my life back. I was out in the garden when I made the decision to un-accept acceptance. I made this determination while looking at the state of my garden. Some of the beds have been fallow since my symptoms began four years ago and are looking more like a young forest than the once fertile and well-tended rows of tomatoes, veggies, and herbs. Some of the beds are in transition though, and I was able to prune a few back and get out the weeds before the heat of summer came on. I have partially restored them, and I struggle to keep the weeds out. But the zinnias I sowed are starting to bloom and attract butterflies. Of all of the gardens, there is one bed that I am content with—it’s been cut back, reworked, replanted and sown with wildflowers--it is thriving and growing and blooming. It was these three beds that brought me to my decision—the wild young forest, the in-between bed fighting off weeds while still blooming bright, and the finished bed where the wildflowers are healthy and abundant, bees and butterflies are busy at the blooms, and the weeds don’t have room to sprout and take hold. To me, my own backyard became the symbolic comparison of my struggle and effort to get symptoms under control. The wild and uncontrolled, alongside that which is still in work and can go either way if not kept in check, bordering that which is satisfying and right and good. I made the decision, that while I can, and for as long as I can, I will not be complacent and sit back. I must tend my life as I tend my garden. I know I can control some of it and each time I make a little effort I get more under control. Water, nutrients, and fresh air can make a big difference in how I look and feel too. I am ready to challenge myself to improve; I am not prepared to accept that my life has gone to the weeds. Return to Table of Contents
  14. Born in the 1860's and married at 16, my great grandmother had a challenging rural life mothering a dozen children. Yet by all accounts, despite many hardships and heartbreaks, she laughed a great deal and lived contentedly into her 90's. What was her secret to happiness? She had a motto that she kept written down and neatly folded inside a mahogany desk drawer. How do I know about her writing down that motto? Teenage me found it many years after her death as I searched for a pen. The folded note lay long forgotten inside the drawer of a desk she had left to one of her daughters. Upon her daughter’s death, the desk was passed on to me. It was the only item inside an otherwise empty desk drawer. The note having become stuck years earlier inside the drawer's metal track may have stayed hidden had I not noticed it years later. Once found, I was determined to read it, so I tugged on it hard several times before I managed to pull it loose, tearing it a little. I unfolded it with great curiosity and found that my great grandmother had written: "Things always work out for the best for those who make the best of how things work out." That's all it said. But really, that's all it needed to say. Her signature appeared underneath. I’m no longer a teenager and have now lived enough decades to understand my great-grandmother 's wisdom. Her advice has stood me in very good stead, particularly with regard to my dysautonomia. Although my dysautonomia symptoms began eighteen years ago, it was only two years ago that they rather abruptly worsened and closed the door on my physical mobility. Suddenly, I found myself unable to stand for more than five minutes at a time, which remains true to this day. I also found myself with time limits regarding how long I could sit up. This change in my health forced me to lie supine for chunks of hours each day. Boredom quickly set in. I viewed all those hours of having to lie down as nothing more than unwanted, frustrating interruptions in my day. Then I remembered that motto: “Things always work out for the best for those who make the best of how things work out.” I set my mind to exploring how I could make the best of this immobility situation I now found myself in. I decided that one way to make the best of things might be to find something productive to do with my hands while I was lying down. One idea that came to me was to paint. I had dabbled with painting on and off since childhood. Painting while lying down seemed like a logical idea for fending off the boredom inherent in being forced to lay down so much. It seemed like it might be worth a try. If it didn’t work out, I would come up with another idea. So… my intention was to follow my great grandmother’s motto and try to make the best of how things had turned out. I was basically hoping that painting might serve as a solution to the problem of feeling frustrated, bored, and unproductive. However, it didn't take long for the painting activities to quickly assume a life of their own. They immediately transformed my hours of frustration and boredom into hours of delightful fun. I no longer feel frustrated or bored at all when the time comes for me to lie down. To my surprise, there have been other unforeseen, positive, ripple effects that have come from painting again. I’ve formed new friendships with some other local artists (who are very accepting of my physical limitations). I have been pleasantly surprised at being approached by a few people interested in buying my art. None of this would have happened if not for my attempts to follow that motto. I look back now and realize that before following my great grandmother's words, my energy was focused on the frustration of the situation instead of the betterment of it. I viewed having to lie down as an interruption of all-those-things-I-wanted-to-be-doing-instead, and that was that. Being constantly frustrated with the situation had put my mind in a negative place. In sharp contrast, I now view the daily lying down episodes as “Okay, now it’s time to shift gears and paint for a while.” The hours swiftly fly and I am having fun while waiting for my body to reboot and allow me to sit/stand up again. I have my great grandmother’s motto to thank for this. Remembering to “Make the best of how things turn out” is, for me, a very powerful perspective shifter. It has helped me tremendously in adapting to my new physical limitations. When it comes to adjusting to my dysautonomia symptoms, I now proactively challenge myself to seek out ways to respond to the question “How can I make the best of this?” This shift in perspective has definitely helped me to maintain a happier life despite my physical limitations and life-altering circumstances. I feel lucky and grateful to have found her words when I did. Likewise, I hope you are able to find my great grandmother’s motto helpful as you work through your own unique dysautonomia challenges. Those of us with dysautonomia are each a little bit different but are also so much the same. You are not alone. Editor's note: Missy's art can be seen on her website Return to newsletter
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